Monday, June 29, 2009
Explanation of addition of letters
I have added the letters that I wrote prior to the first post on this blog entitled "Breaking the news". These are both integral parts of the journey that I am on and are records for me, if no one else.
Letter to family and extended family on June 6, 2009
To my dear family, (siblings, cousins, nephews, nieces and friends who are like family),
I am writing this letter both as information to all of you who care so much about my parents, John and Eva, and as a request for much prayer on their behalf and mine.
You all know that we have been caring for Mom and Dad in some form or another for the past eight years. It has been and honor and blessing to have this responsibility and it is one that we chose willingly. For the past two years (since we moved into our new home with an apartment for them) things have been getting increasingly difficult.
One of the reasons that I am including all of you in this informational letter is because of something that I experienced as a teenager. When my Grandmother was place in a nursing home, I was 18. (Important to note the age as I was young and immature and had no clue at that time how much was involved with caring for aged parents with dementia and health problems.) I had the opportunity to care for Grandmother in my parent’s home the summer before, until her medical issues made it necessary for the family to get more skilled help so I was feeling extra protective. I was not aware how much she had deteriorated and the stress it must have been creating for my aunt and her family so when she was placed in the nursing home, I jumped to incorrect conclusions. Partly for selfish reasons, I don’t want you to jump to incorrect conclusions and mostly because I know that you all care about Mom and Dad and you would like to be included in knowing what is transpiring.
Many of you have seen the amount of work that is necessary to properly care for Mom and Dad. The physical part of taking care of Dad is taking a toll on me physically and it is a toll that I can no longer ignore. He is unable to get himself out of or into bed and he needs assistance for all of his personal care. His level of dementia is such that he had his hearing aide in his mouth for quite some time and later thought that it was a tooth that had come out. The hearing aide was ruined and neither he nor Mom has any recollection of what happened. (He asked me once what happened to it and I just told him it was broken.)
Mom’s dementia has rapidly progressed in the past several months. The most difficult part about it is that she is not able to process and/or remember that Dad is unable to do many things that he has to be helped with. We constantly have to step in and divert her so that he can be cared for properly.
Long story short, I can no longer do this. Dad is too heavy for me to continue to do what it takes to meet his needs. I am exhausted both mentally and physically and we are going to have to place them in a facility where there needs can be attended to by people who work in shifts. I can no longer do this 24/7 and have anything left for my husband, children, grandchildren or myself. My siblings, children and husband are in total support of this decision and are urging me to move ahead. I finally know that I have to do this. We believe that we have found the place. Rosie will be here with me this coming week to stay for a couple of weeks and we will be trying to finalize things during that time.
I have been in the process of looking for a place for several weeks now and have not spoken with Mom and Dad about our plans. In many ways they are like children and it is better not to tell them about things happening too far in advance. I didn’t want to bring it up until I knew that it was going to be a reality. We have had discussions, Mom and I, in her more “aware” moments. One of which was that Dad could never be separated from her or he would surely die. (Her assumption and I agree.) She is in a state in which it I could care for her here alone but I cannot possibly separate them…they need to remain together. We have found a place where they will share a room. We have a few details yet to work out but we are praying that all of them will work out smoothly.
Now for my big request of all of you…I need your prayers. I will begin discussing this with Mom and Dad and I wanted to be covered with prayer before I venture into these waters. Please pray that Mom is able to remember when she cared for her Mom and that she got to a point that she was unable to do it because her own health was failing. Pray that they will be uplifted in their hearts and minds by the Lord who has been so faithful to them through these many years. Pray that I will have wisdom and strength. Pray that they will be blessed by this move with new friends, activities that will stimulate their minds and kind, compassionate caregivers.
Thanks so very much!
With lots of love,
Lois
I am writing this letter both as information to all of you who care so much about my parents, John and Eva, and as a request for much prayer on their behalf and mine.
You all know that we have been caring for Mom and Dad in some form or another for the past eight years. It has been and honor and blessing to have this responsibility and it is one that we chose willingly. For the past two years (since we moved into our new home with an apartment for them) things have been getting increasingly difficult.
One of the reasons that I am including all of you in this informational letter is because of something that I experienced as a teenager. When my Grandmother was place in a nursing home, I was 18. (Important to note the age as I was young and immature and had no clue at that time how much was involved with caring for aged parents with dementia and health problems.) I had the opportunity to care for Grandmother in my parent’s home the summer before, until her medical issues made it necessary for the family to get more skilled help so I was feeling extra protective. I was not aware how much she had deteriorated and the stress it must have been creating for my aunt and her family so when she was placed in the nursing home, I jumped to incorrect conclusions. Partly for selfish reasons, I don’t want you to jump to incorrect conclusions and mostly because I know that you all care about Mom and Dad and you would like to be included in knowing what is transpiring.
Many of you have seen the amount of work that is necessary to properly care for Mom and Dad. The physical part of taking care of Dad is taking a toll on me physically and it is a toll that I can no longer ignore. He is unable to get himself out of or into bed and he needs assistance for all of his personal care. His level of dementia is such that he had his hearing aide in his mouth for quite some time and later thought that it was a tooth that had come out. The hearing aide was ruined and neither he nor Mom has any recollection of what happened. (He asked me once what happened to it and I just told him it was broken.)
Mom’s dementia has rapidly progressed in the past several months. The most difficult part about it is that she is not able to process and/or remember that Dad is unable to do many things that he has to be helped with. We constantly have to step in and divert her so that he can be cared for properly.
Long story short, I can no longer do this. Dad is too heavy for me to continue to do what it takes to meet his needs. I am exhausted both mentally and physically and we are going to have to place them in a facility where there needs can be attended to by people who work in shifts. I can no longer do this 24/7 and have anything left for my husband, children, grandchildren or myself. My siblings, children and husband are in total support of this decision and are urging me to move ahead. I finally know that I have to do this. We believe that we have found the place. Rosie will be here with me this coming week to stay for a couple of weeks and we will be trying to finalize things during that time.
I have been in the process of looking for a place for several weeks now and have not spoken with Mom and Dad about our plans. In many ways they are like children and it is better not to tell them about things happening too far in advance. I didn’t want to bring it up until I knew that it was going to be a reality. We have had discussions, Mom and I, in her more “aware” moments. One of which was that Dad could never be separated from her or he would surely die. (Her assumption and I agree.) She is in a state in which it I could care for her here alone but I cannot possibly separate them…they need to remain together. We have found a place where they will share a room. We have a few details yet to work out but we are praying that all of them will work out smoothly.
Now for my big request of all of you…I need your prayers. I will begin discussing this with Mom and Dad and I wanted to be covered with prayer before I venture into these waters. Please pray that Mom is able to remember when she cared for her Mom and that she got to a point that she was unable to do it because her own health was failing. Pray that they will be uplifted in their hearts and minds by the Lord who has been so faithful to them through these many years. Pray that I will have wisdom and strength. Pray that they will be blessed by this move with new friends, activities that will stimulate their minds and kind, compassionate caregivers.
Thanks so very much!
With lots of love,
Lois
Letter to siblings on April 30, 2009
I am writing this letter to share with you my feelings, frustrations and concerns regarding the care of Mom and Dad. I need you to know how things are going and have progressed and the level of care that is involved at this point in their lives. While we have talked intermittently, you have each probably just gotten pieces of what is taking place here. I am going to try to relate things as clearly as I can so you can more clearly understand the dilemma that I am facing. (As an aside, I am thankful that you, Paul, will be here next week to see for yourself how things have progressed and Rich will be here in two weeks. Rosie was here in Jan. and also saw for herself how things are.)
Physically, Dad has deteriorated to the point that he must be gotten out of bed in the morning, dressed entirely and undressed, told to and watched over as he brushes his teeth, combs his hair and shaves. Often he must be helped with these tasks as he doesn't remember how to do them. His urine bag must be emptied 3 to 4 times a day and his pouch changed twice a week. Most of the time he needs help getting from his chair - any of them - to the walker and back into his chair. If he has been asleep prior to waking him for a meal, he is often quite disoriented, confused and sometimes his frustration causes him to be a bit combative and argumentative. He must be bathed, taken to the bathroom and cleaned up after his bowel movements. He no longer goes in his computer room and if he does he doesn't remember how to turn on the computer and one of the last times he WAS on the computer, Sherri had to close about twenty or thirty IE windows. As I mentioned, he needs help getting out of bed in the morning and it is getting increasingly difficult to be able to do that physically. He has a hospital bed, which has helped with a trapeze but that has only offered minimal help. He has asked Sherri at different times who her parents were, was she adopted, are her parents alive and what agency she worked for. (These are just some comments to help you better understand where he is mentally.) He has mentioned to me several times about finding "this place" while out looking for a place to take a shower quite some time back while he was still driving. He found a bathroom that had bars to help him when he needed it. One time he added that the soap was rather inadequate, though. He has asked me several times who runs this facility. I know that a lot of his being difficult at times is borne out of frustration that he has but can't articulate any longer. I try the best I can to stay calm, kind and sweet to keep from making his frustration worse, but often exhaustion takes it's toll and I just want to finish as quickly as I can the tasks before me and leave the room so that I can get away from a very tiring and difficult situation. He no longer asks questions and tells stories (the same ones) all the time. He has passed that stage in his dementia. He is more silent now most of the time. Even his prayers are less and less clear as they had been. (What is so hard is that he will have a very, very demented day and they you will see clear glimpses of our Dad.) As Dad has moved past the repeated story telling and questions, Mom has moved into that stage.
A couple of months ago I took over the supervision of her checkbook. She was stressing and stressing over reports that she could no longer figure out how to do and really hadn't needed for a long time but she was obsessed with making herself do them. I encouraged her to stop doing the reports as they were only causing her anguish and then later when she could no longer balance her checkbook without considerable frustration, I convinced her that she could let me handle the money for her now to eliminate that stress. It was a little bumpy at first but now I believe that she has forgotten all about it. She read a 3 book series that she had read many years ago just recently. (She didn't remember reading it, but that's okay). She read the 1st book of the second series first by mistake. I gave her it in error. When I realized it, I gave her the first series and told her that she could finish the second series after she read the first. When she went to the second series, she had no memory of reading that first book and is happily re-reading it now. (For the third time). :) She cannot remember, from one minute to the next, an answer to a question that she has just asked. Our mealtimes are quite interesting while I tell her the same story over and over and Sam is kicking me under the table to communicate his acknowledgment of this astounding thing. It's so had to believe that this is happening again...to Mom now.
Mom has no ability to understand Dad's dementia. She fusses at him like he has the ability to change his behavior. I try to divert her to other tasks while I care for the things that she would fuss at him about. I try to tell her that he is not being careless or "naughty"...he has no ability to correctly perform that task but she isn't able to process that and just gets upset the next time all over again. When Dad was beginning to get bad, he would recognize and say things about it. Mom tends to hide things from me, cover things up and pretend that something didn't happen. She just is a different personality and is responding differently to her situation. She tends to not ask for help even though she is miserable but will only respond when help is offered with a "that would be nice". Today, I hooked up a 5-CD changer that we were not using so that they could listen to their many CD's they have. I had gotten them Gaither videos to watch which they enjoyed a lot but Mom loves to have the music on. I discovered many CD's hidden away in the TV cabinet and using the DVD player to play the CD's was difficult because one doesn't last that long. She asked me to show her how to use it...I showed her where the CD's were...pushed the button to pop out the tray. I closed it after she saw it and commented on it...as soon as I closed it she said, the CD's are up there, right? (Pointing to the DVD player that was above the CD player like she had never seen the tray that I showed her.) She has been working on a plastic canvas picture for months now....says I told her too. (I suggested she do that instead of the tiny cross stitch she was trying to do for months and getting nowhere. I thought it would be less frustrating. Now the story is I told her to do it.) :) Anyway, she has gotten nowhere fast on this as well. She sits there and spends more time looking at it and trying to figure it out. That, in itself, is not a problem. It doesn't seem to be upsetting her. I tell you that just to give you a glimpse of her deterioration.
I no longer take them out to lunch as I used to. I just don't have the energy or stamina to do it by myself. Take today, for example. I got up, grabbed a cup of coffee, had to wake up Mom because the home health aide was coming to give Dad a bath at 10. (This is only the second time that Mom has slept this late.) Changed Dad's appliance, struggled to get him out of the bed. He ate breakfast with his p.j.'s on because of his impending bath. Got his breakfast going and then Mom finished up dressing and I fixed her breakfast. Gave them their pills. (With Dad, each pill must be administered one at a time with careful instructions and with no distractions. Many have been switched to chewable and disolvable.) The aide came to take Dad from the table to the bathroom. I put Mom's support socks on and her shoes......I started to give a blow by blow of my day today but everyone has busy days. Suffice it to say that I finished up with them and the things that I was doing with them at about 3:30. I sat down to do this and now it is after five and I will soon need to get supper. We are often at the table until somewhere between 7 & 8 and I start to put them to bed at 8:30. That process usually ends about 9:30 at which time my husband is ready to fall asleep as he has been up since 5:00.
I am physically and emotionally exhausted. I have been on an antidepressant since February and it has helped me not to cry all the time and for that I am thankful. You all have been awesome with emotional and prayer support and I am in no way faulting anyone for this situation. Sam and I willingly took this responsibility and have been blessed to have this opportunity. But I must seriously consider how long I can continue to keep this pace.
Last week I was in S. C. with Andy and Michelle and the new baby while Sherri graciously stepped in for me here. I came home feeling quite refreshed and joyful. Monday with Mom and Dad was a good day. I was cheerful and happy and able to keep up with the day. The next day....boom, I was right back in my hole again. Both Sherri and Sam have said that they are concerned because my need to get away has been getting closer and closer.
A couple of weeks ago, Sherri and I went to see a lady that was recommended to me by one of the nurses that had seen Mom and Dad by an agency that their Dr. sent out when they had urinary infections. This lady is a nurse practitioner and has her doctorate in dementia care somehow. She runs the dementia program at one of the top rated nursing homes in Jacksonville. Anyway, we went to see her and she gave some great advice. (Turned out she was a Christian lady working at a Jewish nursing home.) :-) One thing she said is that I have to take care of myself. If I don't and something happens to me, who will be able to step in and do what I do. She also said that it was a good idea to start looking around to find out what is available in our area, like in-home care and nursing home care. She recommended a great agency for in-home care and I have started with them. I have a lady coming in twice a week for 6 hours each to get them up and do the long morning routine for me. She has come once and comes again tomorrow. She will also be doing 3-12hour shifts next weekend so that we might go back to SC for Beulah's baby baptism. Paul will be here in the house so that a family member is here to pop in and keep them calm and he will be tucking them into bed at night for me. She will do all of their care but it will be good to have him here while we are away. They are so excited about him coming!!!
On Tuesday, I got a phone call from a dear friend who said that God had "placed my face" in front of her on two different occasions recently and knew that she needed to call me. On my way to meet her for coffee yesterday afternoon, I was crying out to God...again...saying "I don't know how I can keep doing this". "Look at me, I had one good day on Monday and now I am back in this hole." I was begging God to show me what to do next. This friend of mine has a mother with Alzheimer's and she is only in her late 60s. Very healthy but very "nuts". She has cared for her in her home for the last 3 years or more at the expense of her husband and children. They are Jamaican and therefore she had issues with getting the care they needed because of that. Long story short....God provided and after much investigating, tons of phone calls and nursing home visits, etc., they have placed her in an awesome place where she has new friends (they are new every day). :) She has activities to stimulate her. She told me, "Lois, it's time...you need to think about doing this and I have already done all the research and I will go with you to look at places for yourself." I argued that the Bible says we are to care for our parents and she said that she used the same verse and her husband said, but what does that mean? He argued that she IS caring for her mother by having her somewhere safe and where she is stimulated and where she can go visit and be a daughter and do fun things with her mother instead of always being emotionally and physically exhausted and frustrated with her mother. She reminded me that I have a husband, children, grandchildren, siblings and friends that also need me and the wisdom that I can share. I have wondered for awhile if life wouldn't be more stimulating for Mom and Dad in a facility where there are activities and new people to meet rather than Mom and Dad sitting for hours on end in their living room.
I know that if it were just Mom that I could probably handle this quite well for quite a time longer. But with Dad's physical limitations, I am wearing out physically. But...as Mom pointed out one day when I tried to talk to her about this, Dad would die if he were sent to live somewhere without Mom and I totally believe that. And I'm sure that she doesn't want to be without him either. The only way that it would work is if they went somewhere together. And if this came about, I would still be their caretaker but a caretaker with better health, I would hope.
Okay, my lap is hot from the computer and I need to quit and make supper. I have alternated writing on my lap and on the table out by the pool with a couple of intervals stepping into the pool up to my calves. :) :) If it weren't time to go figure out something for supper I think I would jump in. The temp. is about 81.
I love you all and I apologize for this extended epistle but I needed to share my heart with you. I am interested in hearing your input and counsel.
Lois
Physically, Dad has deteriorated to the point that he must be gotten out of bed in the morning, dressed entirely and undressed, told to and watched over as he brushes his teeth, combs his hair and shaves. Often he must be helped with these tasks as he doesn't remember how to do them. His urine bag must be emptied 3 to 4 times a day and his pouch changed twice a week. Most of the time he needs help getting from his chair - any of them - to the walker and back into his chair. If he has been asleep prior to waking him for a meal, he is often quite disoriented, confused and sometimes his frustration causes him to be a bit combative and argumentative. He must be bathed, taken to the bathroom and cleaned up after his bowel movements. He no longer goes in his computer room and if he does he doesn't remember how to turn on the computer and one of the last times he WAS on the computer, Sherri had to close about twenty or thirty IE windows. As I mentioned, he needs help getting out of bed in the morning and it is getting increasingly difficult to be able to do that physically. He has a hospital bed, which has helped with a trapeze but that has only offered minimal help. He has asked Sherri at different times who her parents were, was she adopted, are her parents alive and what agency she worked for. (These are just some comments to help you better understand where he is mentally.) He has mentioned to me several times about finding "this place" while out looking for a place to take a shower quite some time back while he was still driving. He found a bathroom that had bars to help him when he needed it. One time he added that the soap was rather inadequate, though. He has asked me several times who runs this facility. I know that a lot of his being difficult at times is borne out of frustration that he has but can't articulate any longer. I try the best I can to stay calm, kind and sweet to keep from making his frustration worse, but often exhaustion takes it's toll and I just want to finish as quickly as I can the tasks before me and leave the room so that I can get away from a very tiring and difficult situation. He no longer asks questions and tells stories (the same ones) all the time. He has passed that stage in his dementia. He is more silent now most of the time. Even his prayers are less and less clear as they had been. (What is so hard is that he will have a very, very demented day and they you will see clear glimpses of our Dad.) As Dad has moved past the repeated story telling and questions, Mom has moved into that stage.
A couple of months ago I took over the supervision of her checkbook. She was stressing and stressing over reports that she could no longer figure out how to do and really hadn't needed for a long time but she was obsessed with making herself do them. I encouraged her to stop doing the reports as they were only causing her anguish and then later when she could no longer balance her checkbook without considerable frustration, I convinced her that she could let me handle the money for her now to eliminate that stress. It was a little bumpy at first but now I believe that she has forgotten all about it. She read a 3 book series that she had read many years ago just recently. (She didn't remember reading it, but that's okay). She read the 1st book of the second series first by mistake. I gave her it in error. When I realized it, I gave her the first series and told her that she could finish the second series after she read the first. When she went to the second series, she had no memory of reading that first book and is happily re-reading it now. (For the third time). :) She cannot remember, from one minute to the next, an answer to a question that she has just asked. Our mealtimes are quite interesting while I tell her the same story over and over and Sam is kicking me under the table to communicate his acknowledgment of this astounding thing. It's so had to believe that this is happening again...to Mom now.
Mom has no ability to understand Dad's dementia. She fusses at him like he has the ability to change his behavior. I try to divert her to other tasks while I care for the things that she would fuss at him about. I try to tell her that he is not being careless or "naughty"...he has no ability to correctly perform that task but she isn't able to process that and just gets upset the next time all over again. When Dad was beginning to get bad, he would recognize and say things about it. Mom tends to hide things from me, cover things up and pretend that something didn't happen. She just is a different personality and is responding differently to her situation. She tends to not ask for help even though she is miserable but will only respond when help is offered with a "that would be nice". Today, I hooked up a 5-CD changer that we were not using so that they could listen to their many CD's they have. I had gotten them Gaither videos to watch which they enjoyed a lot but Mom loves to have the music on. I discovered many CD's hidden away in the TV cabinet and using the DVD player to play the CD's was difficult because one doesn't last that long. She asked me to show her how to use it...I showed her where the CD's were...pushed the button to pop out the tray. I closed it after she saw it and commented on it...as soon as I closed it she said, the CD's are up there, right? (Pointing to the DVD player that was above the CD player like she had never seen the tray that I showed her.) She has been working on a plastic canvas picture for months now....says I told her too. (I suggested she do that instead of the tiny cross stitch she was trying to do for months and getting nowhere. I thought it would be less frustrating. Now the story is I told her to do it.) :) Anyway, she has gotten nowhere fast on this as well. She sits there and spends more time looking at it and trying to figure it out. That, in itself, is not a problem. It doesn't seem to be upsetting her. I tell you that just to give you a glimpse of her deterioration.
I no longer take them out to lunch as I used to. I just don't have the energy or stamina to do it by myself. Take today, for example. I got up, grabbed a cup of coffee, had to wake up Mom because the home health aide was coming to give Dad a bath at 10. (This is only the second time that Mom has slept this late.) Changed Dad's appliance, struggled to get him out of the bed. He ate breakfast with his p.j.'s on because of his impending bath. Got his breakfast going and then Mom finished up dressing and I fixed her breakfast. Gave them their pills. (With Dad, each pill must be administered one at a time with careful instructions and with no distractions. Many have been switched to chewable and disolvable.) The aide came to take Dad from the table to the bathroom. I put Mom's support socks on and her shoes......I started to give a blow by blow of my day today but everyone has busy days. Suffice it to say that I finished up with them and the things that I was doing with them at about 3:30. I sat down to do this and now it is after five and I will soon need to get supper. We are often at the table until somewhere between 7 & 8 and I start to put them to bed at 8:30. That process usually ends about 9:30 at which time my husband is ready to fall asleep as he has been up since 5:00.
I am physically and emotionally exhausted. I have been on an antidepressant since February and it has helped me not to cry all the time and for that I am thankful. You all have been awesome with emotional and prayer support and I am in no way faulting anyone for this situation. Sam and I willingly took this responsibility and have been blessed to have this opportunity. But I must seriously consider how long I can continue to keep this pace.
Last week I was in S. C. with Andy and Michelle and the new baby while Sherri graciously stepped in for me here. I came home feeling quite refreshed and joyful. Monday with Mom and Dad was a good day. I was cheerful and happy and able to keep up with the day. The next day....boom, I was right back in my hole again. Both Sherri and Sam have said that they are concerned because my need to get away has been getting closer and closer.
A couple of weeks ago, Sherri and I went to see a lady that was recommended to me by one of the nurses that had seen Mom and Dad by an agency that their Dr. sent out when they had urinary infections. This lady is a nurse practitioner and has her doctorate in dementia care somehow. She runs the dementia program at one of the top rated nursing homes in Jacksonville. Anyway, we went to see her and she gave some great advice. (Turned out she was a Christian lady working at a Jewish nursing home.) :-) One thing she said is that I have to take care of myself. If I don't and something happens to me, who will be able to step in and do what I do. She also said that it was a good idea to start looking around to find out what is available in our area, like in-home care and nursing home care. She recommended a great agency for in-home care and I have started with them. I have a lady coming in twice a week for 6 hours each to get them up and do the long morning routine for me. She has come once and comes again tomorrow. She will also be doing 3-12hour shifts next weekend so that we might go back to SC for Beulah's baby baptism. Paul will be here in the house so that a family member is here to pop in and keep them calm and he will be tucking them into bed at night for me. She will do all of their care but it will be good to have him here while we are away. They are so excited about him coming!!!
On Tuesday, I got a phone call from a dear friend who said that God had "placed my face" in front of her on two different occasions recently and knew that she needed to call me. On my way to meet her for coffee yesterday afternoon, I was crying out to God...again...saying "I don't know how I can keep doing this". "Look at me, I had one good day on Monday and now I am back in this hole." I was begging God to show me what to do next. This friend of mine has a mother with Alzheimer's and she is only in her late 60s. Very healthy but very "nuts". She has cared for her in her home for the last 3 years or more at the expense of her husband and children. They are Jamaican and therefore she had issues with getting the care they needed because of that. Long story short....God provided and after much investigating, tons of phone calls and nursing home visits, etc., they have placed her in an awesome place where she has new friends (they are new every day). :) She has activities to stimulate her. She told me, "Lois, it's time...you need to think about doing this and I have already done all the research and I will go with you to look at places for yourself." I argued that the Bible says we are to care for our parents and she said that she used the same verse and her husband said, but what does that mean? He argued that she IS caring for her mother by having her somewhere safe and where she is stimulated and where she can go visit and be a daughter and do fun things with her mother instead of always being emotionally and physically exhausted and frustrated with her mother. She reminded me that I have a husband, children, grandchildren, siblings and friends that also need me and the wisdom that I can share. I have wondered for awhile if life wouldn't be more stimulating for Mom and Dad in a facility where there are activities and new people to meet rather than Mom and Dad sitting for hours on end in their living room.
I know that if it were just Mom that I could probably handle this quite well for quite a time longer. But with Dad's physical limitations, I am wearing out physically. But...as Mom pointed out one day when I tried to talk to her about this, Dad would die if he were sent to live somewhere without Mom and I totally believe that. And I'm sure that she doesn't want to be without him either. The only way that it would work is if they went somewhere together. And if this came about, I would still be their caretaker but a caretaker with better health, I would hope.
Okay, my lap is hot from the computer and I need to quit and make supper. I have alternated writing on my lap and on the table out by the pool with a couple of intervals stepping into the pool up to my calves. :) :) If it weren't time to go figure out something for supper I think I would jump in. The temp. is about 81.
I love you all and I apologize for this extended epistle but I needed to share my heart with you. I am interested in hearing your input and counsel.
Lois
At peace...again
SUNDAY JUNE 28, 2009
Mom called me this morning all upset. I could hardly understand her on the phone and she sounded a bit confused as well. She told me that Dad had an accident in his bed that that it was quite upsetting to her because the nurses had to clean him up and she was concerned that he didn’t have any clean pajamas. I assured her that he did and they were in the drawer in there. She couldn’t seem to get out what she wanted to say so she finally told me that she would explain it all when I came in to see them.
Kathy and Carmen were coming for lunch and I knew that they would be later as they were coming after church in St. Augustine so I had time to run up and check on them.
I found them in Physical Therapy when I arrived. Sitting side by side in chairs and peddling the exerciser. They were being attended to by the nicest Christian physical therapist man from the Phillipines and Mom was thoroughly enjoying him! She was surprised and happy to see me. I sat in there with them for about 30 minutes and was relieved of my guilt and my spirits lifted tremendously as I saw how “just fine” they were! God keeps sending them wonderful people to love and care for them. What’s my problem?? Why do I let this happen?? I want to be careful of their feelings. I don’t want to neglect them. Mike reminded me today when I got back from the nursing home that if it had happened on my watch, I would have had the whole responsibility on my shoulders of cleaning it all up and there, they have several people that can help.
We had such a wonderful time the Kathy, Carmen, Dana and Mia this afternoon. They came to see Mike and Ria and hang out with us. After Mike and Ria left, I had a chance to play in the pool with the DeLisi’s. What fun!!! Kathy said that it was good to see me relax so much and enjoy myself. After they left, Sam and I went up to the nursing home to see Mom and Dad as I had told them that I would return later today to spend some more time with them.
We took some objects that we had found in their apartment that I wasn’t sure of their uses. Neither was Mom. Neither was Dad. Mom guessed at a couple of things. Earlier, I had made up a memory box for Dad. I hadn’t had an opportunity to show him the things in it but I had left it in the room in one of the empty drawers. I got the box out tonight and got a few things out one and a time. They were different gadgets that I had found in his office laying around. A couple of the things were things he had made. The tiny bowl he had made by making rings of wood with his scroll saw held his interest the longest, except for the pliers that he held in his hand for quite some time. I got out a flashlight that I had brought from his bedside stand and he asked me if I had “purloined” it. He has amazed people with his word usage at this stage in his life with words such as “insipid”, can’t remember the other one (ask Rosie) and purloined! Something in his brain is still working. Growing up he would use many big words because he was always learning new ones. When I asked what they meant, he would say, “look it up in the dictionary…that’s the only way you will remember it.”
When we left them tonight, I felt at peace and lighthearted. I’m so thankful for how supportive Sam is and how kind he is to them when we visit. We talked on the way home about how our visits with them are so much more meaningful than a lot of the time spent with them when they were in our home. We enjoy the visits and feel like they get better quality time with us than before. Another plus to this situation…I really do feel like I am much more free to be their daughter now that I am not their full time caretaker
Mom called me this morning all upset. I could hardly understand her on the phone and she sounded a bit confused as well. She told me that Dad had an accident in his bed that that it was quite upsetting to her because the nurses had to clean him up and she was concerned that he didn’t have any clean pajamas. I assured her that he did and they were in the drawer in there. She couldn’t seem to get out what she wanted to say so she finally told me that she would explain it all when I came in to see them.
Kathy and Carmen were coming for lunch and I knew that they would be later as they were coming after church in St. Augustine so I had time to run up and check on them.
I found them in Physical Therapy when I arrived. Sitting side by side in chairs and peddling the exerciser. They were being attended to by the nicest Christian physical therapist man from the Phillipines and Mom was thoroughly enjoying him! She was surprised and happy to see me. I sat in there with them for about 30 minutes and was relieved of my guilt and my spirits lifted tremendously as I saw how “just fine” they were! God keeps sending them wonderful people to love and care for them. What’s my problem?? Why do I let this happen?? I want to be careful of their feelings. I don’t want to neglect them. Mike reminded me today when I got back from the nursing home that if it had happened on my watch, I would have had the whole responsibility on my shoulders of cleaning it all up and there, they have several people that can help.
We had such a wonderful time the Kathy, Carmen, Dana and Mia this afternoon. They came to see Mike and Ria and hang out with us. After Mike and Ria left, I had a chance to play in the pool with the DeLisi’s. What fun!!! Kathy said that it was good to see me relax so much and enjoy myself. After they left, Sam and I went up to the nursing home to see Mom and Dad as I had told them that I would return later today to spend some more time with them.
We took some objects that we had found in their apartment that I wasn’t sure of their uses. Neither was Mom. Neither was Dad. Mom guessed at a couple of things. Earlier, I had made up a memory box for Dad. I hadn’t had an opportunity to show him the things in it but I had left it in the room in one of the empty drawers. I got the box out tonight and got a few things out one and a time. They were different gadgets that I had found in his office laying around. A couple of the things were things he had made. The tiny bowl he had made by making rings of wood with his scroll saw held his interest the longest, except for the pliers that he held in his hand for quite some time. I got out a flashlight that I had brought from his bedside stand and he asked me if I had “purloined” it. He has amazed people with his word usage at this stage in his life with words such as “insipid”, can’t remember the other one (ask Rosie) and purloined! Something in his brain is still working. Growing up he would use many big words because he was always learning new ones. When I asked what they meant, he would say, “look it up in the dictionary…that’s the only way you will remember it.”
When we left them tonight, I felt at peace and lighthearted. I’m so thankful for how supportive Sam is and how kind he is to them when we visit. We talked on the way home about how our visits with them are so much more meaningful than a lot of the time spent with them when they were in our home. We enjoy the visits and feel like they get better quality time with us than before. Another plus to this situation…I really do feel like I am much more free to be their daughter now that I am not their full time caretaker
Feeling Guilty
June 27, 2009
We are almost at week two. This past weekend Mike and Ria came for a visit. They actually arrived late Thursday night (early Friday morning, to be exact). It was great to have them here. This was the first visit with the along since they were married. What a neat time to be able to spend together getting to know our wonderful daughter-in-law even better. (As much as I love Mom and Dad and have been dedicated to their care, I have missed out on many things with interacting with our children.) On Friday, the three of us went to meet Sam for lunch near his office. Afterwards, we stopped at the nursing home to visit with Mom and Dad. When we got there, Mom said to me, “Oh, good!! You’re here.” She then proceeded to tell me that she had been having some problems. Gloria, her nurse, saw me and came to give me a hug. She heard Mom talking to me about having problems with bathroom issues. Unfortunately, it had been communicated incorrectly to Gloria as to what was going on. She thought that Mom was having issues with her urine and had taken a culture to send out. Don’t know who got mixed up or how but in the process of the three of us talking, I was able to discern that it was not urine but bowel issues. Mom told me that she had not been able to have a BM so she asked for help…the help they gave her caused loose stools and lots of them. Soon after we arrived, Mom needed help in the bathroom…lots of it…while Mike & Ria “visited” with Dad. I spoke with their nurse (a really smart, nice and affable male nurse who only works their on the weekends) and let him know that she was having trouble controlling things and that she wasn’t so good about asking for help from others and it might be a good idea to let her CNA know so that Mom could have the help she needed.
On Sat. morning we stopped in to see them (all four of us) before we headed to St. Augustine for the day. Mike and Ria wanted to go to the beach and St. George Street. When we got there, I discovered that Mom was still having issues. I need to learn that what Mom tells me is not always the whole story. Not that she is lying – she doesn’t remember what has transpired. Kind of like when my children were in school and they would tell me something that happened and in their minds and the way they communicated the story, I would jump all over it thinking that they had been mistreated. Bad decision…I quickly learned that it was a good thing to talk to the teacher and collect all the information before I went nuts on the teacher. Similar situation with her. Mom tells me that no one has helped her and that she has been having trouble cleaning up and I go out to find the CNA to let her know that Mom is having issues and to please help her. Guess what??? She already has. When she was helping Dad to get up for the day, Mom had made 3 trips to the bathroom so she asked her if she needed help so she helped her. She knew all about it.
We headed out to St. Augustine and didn’t get back to Orange Park until about 8 PM. We had a wonderful day together and we up late playing in the pool together. Since I had only seen them for about ½ hour in the morning and hadn’t spoken with them at all anymore, I started to feel guilty for the first time since we had place them there. I struggled with it – fighting it off and on during the evening. Like I had abandoned them to have fun.
We are almost at week two. This past weekend Mike and Ria came for a visit. They actually arrived late Thursday night (early Friday morning, to be exact). It was great to have them here. This was the first visit with the along since they were married. What a neat time to be able to spend together getting to know our wonderful daughter-in-law even better. (As much as I love Mom and Dad and have been dedicated to their care, I have missed out on many things with interacting with our children.) On Friday, the three of us went to meet Sam for lunch near his office. Afterwards, we stopped at the nursing home to visit with Mom and Dad. When we got there, Mom said to me, “Oh, good!! You’re here.” She then proceeded to tell me that she had been having some problems. Gloria, her nurse, saw me and came to give me a hug. She heard Mom talking to me about having problems with bathroom issues. Unfortunately, it had been communicated incorrectly to Gloria as to what was going on. She thought that Mom was having issues with her urine and had taken a culture to send out. Don’t know who got mixed up or how but in the process of the three of us talking, I was able to discern that it was not urine but bowel issues. Mom told me that she had not been able to have a BM so she asked for help…the help they gave her caused loose stools and lots of them. Soon after we arrived, Mom needed help in the bathroom…lots of it…while Mike & Ria “visited” with Dad. I spoke with their nurse (a really smart, nice and affable male nurse who only works their on the weekends) and let him know that she was having trouble controlling things and that she wasn’t so good about asking for help from others and it might be a good idea to let her CNA know so that Mom could have the help she needed.
On Sat. morning we stopped in to see them (all four of us) before we headed to St. Augustine for the day. Mike and Ria wanted to go to the beach and St. George Street. When we got there, I discovered that Mom was still having issues. I need to learn that what Mom tells me is not always the whole story. Not that she is lying – she doesn’t remember what has transpired. Kind of like when my children were in school and they would tell me something that happened and in their minds and the way they communicated the story, I would jump all over it thinking that they had been mistreated. Bad decision…I quickly learned that it was a good thing to talk to the teacher and collect all the information before I went nuts on the teacher. Similar situation with her. Mom tells me that no one has helped her and that she has been having trouble cleaning up and I go out to find the CNA to let her know that Mom is having issues and to please help her. Guess what??? She already has. When she was helping Dad to get up for the day, Mom had made 3 trips to the bathroom so she asked her if she needed help so she helped her. She knew all about it.
We headed out to St. Augustine and didn’t get back to Orange Park until about 8 PM. We had a wonderful day together and we up late playing in the pool together. Since I had only seen them for about ½ hour in the morning and hadn’t spoken with them at all anymore, I started to feel guilty for the first time since we had place them there. I struggled with it – fighting it off and on during the evening. Like I had abandoned them to have fun.
Teaching
JUNE 26, 2009
This is the parent/grandparent update for today. First of all, I had to call in early to let someone know that I had removed Dad’s shaver yesterday. I bought a new one last night that would be easier to clean than the one he already had. The other one gunked up so bad every time he shaved or was shaved. I always cleaned it here at home with compressed air to blow out all the clippings but that was a little difficult at the nursing home.
When I spoke to her about the shaver, I asked if there was a time that I could come in and talk with her about some concerns that I had and we picked noon because her other meetings that were going on this morning.
I got to the nursing home about 11:30 am and she was busy until about 12:30. No problem, I hung out with Mom and Dad and got to do more “training” while I waited. It seems that the staff there has never seen an iliostomomy or urostomy - whichever you choose to call it. That is the procedure that reroutes the urine directly from the kidney to a place on the abdomen into a bag. This is not rocket science but one would think it is when you see the confusion this thing has caused at the nursing home! Today I discovered a clue to the “being wet” that I discovered with Dad yesterday. Yesterday, I discovered that the seal wasn’t sealed. The “ostomy” appliance is a two-piece thing. The faceplate adheres directly to the body and the bag that the urine drains into snaps tightly to that. This forms a nice tight seal that doesn’t leak. Unless you don’t snap it all the way on and then any movement of the body back and forth will loosen this up and open up somewhat like an unsealed Ziploc bag that is only partially closed. Sorry, TMI? Well, I need to clarify to make my point.
While I was in the room visiting, they came to take Dad for his shower. That’s his favorite part of being cared for my others….NOT. The girls were sweet and kind and asked me questions about what to do. Well, when they came back with him the CNA proudly announced to me that she had removed his bag and rinsed it out to clean out the urine and freshen it up, so to speak. I told her, thanks, but you are not supposed to do that. It is only to be removed, emptied, changed, etc., by the RN. I checked it while she was there and saw that it wasn’t sealed again. This is very difficult to do while on the patient. It is much easier to snap it together before you apply it to the body. I showed her that it wasn’t sealed, explained the whole thing to her and snapped the thing on tight! I showed them how to put his support belt on – it was pulling on the ostomy area.
Later, when I talked with the unit manager/charge nurse, I suggested that when a new patient arrives, it might be helpful to have all of the staff that will be dealing with this person to have a training session explaining all of the things of interest about the patient and then describe and inform of all the medical needs. Why they have certain meds, how to take care of a urostomy and information about their backgrounds.
I offered to volunteer in a capacity to help with this education if needed.
I may be aware of these things that need to be worked out but, praise
God, Mom and Dad seem to be blissfully unaware and are happy – at least Mom is – and enjoying the new busyness. They are tired but it is a good tired - a busy tired. Falling asleep again!
This is the parent/grandparent update for today. First of all, I had to call in early to let someone know that I had removed Dad’s shaver yesterday. I bought a new one last night that would be easier to clean than the one he already had. The other one gunked up so bad every time he shaved or was shaved. I always cleaned it here at home with compressed air to blow out all the clippings but that was a little difficult at the nursing home.
When I spoke to her about the shaver, I asked if there was a time that I could come in and talk with her about some concerns that I had and we picked noon because her other meetings that were going on this morning.
I got to the nursing home about 11:30 am and she was busy until about 12:30. No problem, I hung out with Mom and Dad and got to do more “training” while I waited. It seems that the staff there has never seen an iliostomomy or urostomy - whichever you choose to call it. That is the procedure that reroutes the urine directly from the kidney to a place on the abdomen into a bag. This is not rocket science but one would think it is when you see the confusion this thing has caused at the nursing home! Today I discovered a clue to the “being wet” that I discovered with Dad yesterday. Yesterday, I discovered that the seal wasn’t sealed. The “ostomy” appliance is a two-piece thing. The faceplate adheres directly to the body and the bag that the urine drains into snaps tightly to that. This forms a nice tight seal that doesn’t leak. Unless you don’t snap it all the way on and then any movement of the body back and forth will loosen this up and open up somewhat like an unsealed Ziploc bag that is only partially closed. Sorry, TMI? Well, I need to clarify to make my point.
While I was in the room visiting, they came to take Dad for his shower. That’s his favorite part of being cared for my others….NOT. The girls were sweet and kind and asked me questions about what to do. Well, when they came back with him the CNA proudly announced to me that she had removed his bag and rinsed it out to clean out the urine and freshen it up, so to speak. I told her, thanks, but you are not supposed to do that. It is only to be removed, emptied, changed, etc., by the RN. I checked it while she was there and saw that it wasn’t sealed again. This is very difficult to do while on the patient. It is much easier to snap it together before you apply it to the body. I showed her that it wasn’t sealed, explained the whole thing to her and snapped the thing on tight! I showed them how to put his support belt on – it was pulling on the ostomy area.
Later, when I talked with the unit manager/charge nurse, I suggested that when a new patient arrives, it might be helpful to have all of the staff that will be dealing with this person to have a training session explaining all of the things of interest about the patient and then describe and inform of all the medical needs. Why they have certain meds, how to take care of a urostomy and information about their backgrounds.
I offered to volunteer in a capacity to help with this education if needed.
I may be aware of these things that need to be worked out but, praise
God, Mom and Dad seem to be blissfully unaware and are happy – at least Mom is – and enjoying the new busyness. They are tired but it is a good tired - a busy tired. Falling asleep again!
Protecting
THURSDAY, JUNE 25, 2009
Today, I had another adventure. I had noticed in Dad’s underwear when I washed them that there was a strange stain in the front of his underwear….it looked like a pus stain. That puzzled me as I had done his laundry for awhile and never seen this. So today when I was there I told Dad that I wanted to check his belly and when I did, I discovered that his underwear and pants were wet. His bag was leaking. On further examination, I found that the seal between the faceplate and the bag was not on correctly. It hadn’t been snapped all the way and it was leaking slowly out as he moved around. I went to tell his nurse who was next door giving out meds. I had left the supplies there on admission and I decided that I would go ahead and clean him up and change his appliance to save her the time and boy am I glad that I did. I got his pants off and got the bed protector and placed it on top of his comforter and had him lay down. Got gloves and a soapy washcloth to clean the urine off of his body. As I began to wash him I discovered that he had a rash between his legs and that he had oohy gooey stuff in the cracks of his legs in his crotch. Now and I am thinking this thing through, it was probably from the urine that had been oozing for two days. I say two days because when I got the clothes home and washed tonight, I discovered that yesterday’s underwear looked like the ones I took off today when I cleaned. The worst part was that his penis was raw on the edge of it and that was probably where the pus looking stains came from and he was in pain when I washed it. I showed all of this Rosemonde (his sweet nurse). I also showed her how to snap the appliance pieces together. I also couldn’t find his support belt when I was there. Found it in a plastic bag in the laundry bag when I got home. It reeked of urine. So WHY didn’t the person who changed him discover why he was wet and see that it got taken care of and clean him up properly. Rosemonde gave me a soothing cream to punt in the raw, red areas of his crotch and he said that it felt a lot better. I will have a talk with the unit mgr. tomorrow. The other thing was that Mom told me that her eye was hurting a lot. Well, I know that this is because she hasn’t gotten her eye drops at night on a regular basis or this would not be happening. Rosemonde put some in then when she was doing meds and said she would put more in later when she went to bed. The nurse came to give Mom her inhaler without the chamber. I said she needs the chamber. She was looking in her meds card and did’n’t have a clue what she was looking for. We found it and I had to show her how to use it. Shouldn’t the staff get trained in the care of a new patient? Shouldn’t each one learn about the unique characteristics of a new pt.?
Mom complained about the crafts activity today. She thought they were doing it a dumb way (making flags.) I spoke with someone one from the activities dept. They saw that she was getting frustrated because they were doing it that way. I explained that she had been a teacher of elementary and that her memory remembered some of that stuff and she thought it was a goofy way to make a flag. She missed the important point that everyone had a job to do this way.
Tomorrow I will adjust and try to figure out what’s going on. Falling asleep now.
Today, I had another adventure. I had noticed in Dad’s underwear when I washed them that there was a strange stain in the front of his underwear….it looked like a pus stain. That puzzled me as I had done his laundry for awhile and never seen this. So today when I was there I told Dad that I wanted to check his belly and when I did, I discovered that his underwear and pants were wet. His bag was leaking. On further examination, I found that the seal between the faceplate and the bag was not on correctly. It hadn’t been snapped all the way and it was leaking slowly out as he moved around. I went to tell his nurse who was next door giving out meds. I had left the supplies there on admission and I decided that I would go ahead and clean him up and change his appliance to save her the time and boy am I glad that I did. I got his pants off and got the bed protector and placed it on top of his comforter and had him lay down. Got gloves and a soapy washcloth to clean the urine off of his body. As I began to wash him I discovered that he had a rash between his legs and that he had oohy gooey stuff in the cracks of his legs in his crotch. Now and I am thinking this thing through, it was probably from the urine that had been oozing for two days. I say two days because when I got the clothes home and washed tonight, I discovered that yesterday’s underwear looked like the ones I took off today when I cleaned. The worst part was that his penis was raw on the edge of it and that was probably where the pus looking stains came from and he was in pain when I washed it. I showed all of this Rosemonde (his sweet nurse). I also showed her how to snap the appliance pieces together. I also couldn’t find his support belt when I was there. Found it in a plastic bag in the laundry bag when I got home. It reeked of urine. So WHY didn’t the person who changed him discover why he was wet and see that it got taken care of and clean him up properly. Rosemonde gave me a soothing cream to punt in the raw, red areas of his crotch and he said that it felt a lot better. I will have a talk with the unit mgr. tomorrow. The other thing was that Mom told me that her eye was hurting a lot. Well, I know that this is because she hasn’t gotten her eye drops at night on a regular basis or this would not be happening. Rosemonde put some in then when she was doing meds and said she would put more in later when she went to bed. The nurse came to give Mom her inhaler without the chamber. I said she needs the chamber. She was looking in her meds card and did’n’t have a clue what she was looking for. We found it and I had to show her how to use it. Shouldn’t the staff get trained in the care of a new patient? Shouldn’t each one learn about the unique characteristics of a new pt.?
Mom complained about the crafts activity today. She thought they were doing it a dumb way (making flags.) I spoke with someone one from the activities dept. They saw that she was getting frustrated because they were doing it that way. I explained that she had been a teacher of elementary and that her memory remembered some of that stuff and she thought it was a goofy way to make a flag. She missed the important point that everyone had a job to do this way.
Tomorrow I will adjust and try to figure out what’s going on. Falling asleep now.
Adjusting
TUESDAY, JUNE 23, 2009
Monday evening Sam and I drove halfway to Tallahassee to meet Heather and family for supper. Sam met me at the nursing home to change his shirt since I was already their for a short visit. We left his car there and when we got back I decided to stop in and check in on Mom and Dad. I was about 8:45. Dad was in his p.j.s in his wheelchair. I had wanted to take a peek at his urostomomy to make sure things were looking okay.
****On day one it was rather obvious that the staff was not experienced in dealing with a urostomomy (technically known as an ileal conduit urinary diversion) patient. So train them!! An ileal conduit urinary diversion is one of the most used surgical techniques for the diversion of urine after a patient has had their bladder removed. The end of the ileum is brought out through an opening (a stoma) in the abdominal wall. The urine is collected through a bag that attaches on the outside of the body over the stoma. The bag must be periodically emptied of urine.****
I found that he still had his support belt on. (He doesn't sleep in it.) Mom told me that he had just a BM and that the “girl” had helped him. I peeked into his underwear when I took his belt off and found that he had BM in his underwear and on closer inspection found that he still had a lot on his bottom. I cleaned him up and changed his underwear after trying to find a nurse or CNA to find out what happened. Another CNA said she would look for his and then I found the nurse who was also looking for his CNA named Tonya. I explained what had happened and that he could not be relied upon to clean himself up.
The next morning I met with Shelly Jones to let her know what had happened. I also asked other questions regarding the fact that it seemed that Dad never had anything to drink and when I asked about it, I was told that it had to be thickened. Yes, but!!!! Get it already!! I am concerned about him becoming dehydrated and his dementia is affected by that as well. So I took in a bottle of Apricot nectar for his fridge in the room so that I had something thickened to give him when I am there. She said that they already had little glasses of the thickened water and we should probably have several of those in his fridge. A day and a half later, there is still no thickened water in his fridge. I also asked about Mom’s inhaler. Why was she getting it a 5:00? She is to have it twice a day. How is it split up so that it is close to 8 to 10 hours apart? She said that she would get with Debbie, the unit manager and that she would probably give me a call. That was Tues. morning. (I also asked her about how many showers they were to get a week and she told me three).
I went back in the afternoon to visit Mom and Dad as I hadn’t seen them in the morning when I was there to see Shelly and drop off the paperwork to the business office. I got there just after the shift change. For the past week I kept watching Dad’s hair to see if he had gotten a shower. His hair continued to get greasier and greasier. I asked Mom if he had a shower and she said she had no recollection of it. I ran my hand across his hair and my hands had grease on them. I went and checked his toothbrush and it was unopened. So, it was obvious that he had not been showered in a week and that his teeth had not been brushed in the whole week as well. The CNA came in to plan Mom’s shower with her and I asked about Dad’s. She checked and said that he was to have had one in the morning. She went to check with the nurse about his bathing schedule. At this point, I was getting very upset. I talked to a nurse at the nurse’s station and told her (started with Grace) what I was upset about. The morning nurse was still there and she said that she would get to the bottom of it. I then went to Shelly’s office and started to cry while explaining to her what was going on. She called Debbie, the unit mgr. and she met me in Mom and Dad’s room and we discussed this. She was not happy at all and said that she would be handling it.
On day one it was rather obvious that the staff was not experienced in dealing with a urostomomy (technically known as an ileal conduit urinary diversion) patient. So train them!!
***An ileal conduit urinary diversion is one of the most used surgical techniques for the diversion of urine after a patient has had their bladder removed. The end of the ileum is brought out through an opening (a stoma) in the abdominal wall. The urine is collected through a bag that attaches on the outside of the body over the stoma. The bag must be periodically emptied of urine.***
Monday evening Sam and I drove halfway to Tallahassee to meet Heather and family for supper. Sam met me at the nursing home to change his shirt since I was already their for a short visit. We left his car there and when we got back I decided to stop in and check in on Mom and Dad. I was about 8:45. Dad was in his p.j.s in his wheelchair. I had wanted to take a peek at his urostomomy to make sure things were looking okay.
****On day one it was rather obvious that the staff was not experienced in dealing with a urostomomy (technically known as an ileal conduit urinary diversion) patient. So train them!! An ileal conduit urinary diversion is one of the most used surgical techniques for the diversion of urine after a patient has had their bladder removed. The end of the ileum is brought out through an opening (a stoma) in the abdominal wall. The urine is collected through a bag that attaches on the outside of the body over the stoma. The bag must be periodically emptied of urine.****
I found that he still had his support belt on. (He doesn't sleep in it.) Mom told me that he had just a BM and that the “girl” had helped him. I peeked into his underwear when I took his belt off and found that he had BM in his underwear and on closer inspection found that he still had a lot on his bottom. I cleaned him up and changed his underwear after trying to find a nurse or CNA to find out what happened. Another CNA said she would look for his and then I found the nurse who was also looking for his CNA named Tonya. I explained what had happened and that he could not be relied upon to clean himself up.
The next morning I met with Shelly Jones to let her know what had happened. I also asked other questions regarding the fact that it seemed that Dad never had anything to drink and when I asked about it, I was told that it had to be thickened. Yes, but!!!! Get it already!! I am concerned about him becoming dehydrated and his dementia is affected by that as well. So I took in a bottle of Apricot nectar for his fridge in the room so that I had something thickened to give him when I am there. She said that they already had little glasses of the thickened water and we should probably have several of those in his fridge. A day and a half later, there is still no thickened water in his fridge. I also asked about Mom’s inhaler. Why was she getting it a 5:00? She is to have it twice a day. How is it split up so that it is close to 8 to 10 hours apart? She said that she would get with Debbie, the unit manager and that she would probably give me a call. That was Tues. morning. (I also asked her about how many showers they were to get a week and she told me three).
I went back in the afternoon to visit Mom and Dad as I hadn’t seen them in the morning when I was there to see Shelly and drop off the paperwork to the business office. I got there just after the shift change. For the past week I kept watching Dad’s hair to see if he had gotten a shower. His hair continued to get greasier and greasier. I asked Mom if he had a shower and she said she had no recollection of it. I ran my hand across his hair and my hands had grease on them. I went and checked his toothbrush and it was unopened. So, it was obvious that he had not been showered in a week and that his teeth had not been brushed in the whole week as well. The CNA came in to plan Mom’s shower with her and I asked about Dad’s. She checked and said that he was to have had one in the morning. She went to check with the nurse about his bathing schedule. At this point, I was getting very upset. I talked to a nurse at the nurse’s station and told her (started with Grace) what I was upset about. The morning nurse was still there and she said that she would get to the bottom of it. I then went to Shelly’s office and started to cry while explaining to her what was going on. She called Debbie, the unit mgr. and she met me in Mom and Dad’s room and we discussed this. She was not happy at all and said that she would be handling it.
On day one it was rather obvious that the staff was not experienced in dealing with a urostomomy (technically known as an ileal conduit urinary diversion) patient. So train them!!
***An ileal conduit urinary diversion is one of the most used surgical techniques for the diversion of urine after a patient has had their bladder removed. The end of the ileum is brought out through an opening (a stoma) in the abdominal wall. The urine is collected through a bag that attaches on the outside of the body over the stoma. The bag must be periodically emptied of urine.***
Breaking the news
JUNE 8, 2009
Tonight I talked to Mom and Dad about them moving into (I didn’t use the word “nursing home”) a place where they could live for awhile so that I could have some time for my body to heal. I wrote a letter to family and friends asking for prayer and informing them of our intentions and why. I was just praying that God would open the door at the right time for me to talk to them about it. Tonight, after supper, Sam had to go to a meeting and Mom and Dad were still sitting at the table and things seemed calm and quiet. I couldn’t seem to get the idea off my mind about talking to them about. Up until that point I had not had any inclination to say anything and hadn’t a clue where to start. As it kept coming up in my mind, I kept praying for the right time, thinking that I would get some kind of comment that would lead into it. I kept saying, “show me, open the door” and I finally got it…the time was NOW!
I had prayed for the right words to say but even more, I had lots of other people praying for me AND for them. So I started out with asking Mom if she remembered how it was when she was so tired that her Dr. told her that she could no longer care for her mother in her home. She said she did. I told her that I am at that point – that I am worn out, that my health is being affected by the care that is necessary with Dad’s needs. His physical needs, like getting him out of bed in the morning, are beginning to greatly affect me.
I told them that I had been looking and looking to find a place for them to stay while my body had a chance to heal. I told them that I was concerned because I am so tired all the time from the work that I do to care for them that I no longer have the time or energy to just be a daughter and do fun things with them. If there were to be somewhere else where someone else was doing to the work for them that needed to be done that I would have opportunity to do fun things with them again and be a daughter instead of a caretaker. I felt like they would have more stimulation in a situation where there would be activities going on and people around them more often. I told them that they would probably find that they would have a lot more company as people would be more comfortable going to see them there than in our house.
First off, Mom didn’t seem to get it. She said that she liked to be active and walk when it wasn’t raining and the puzzle she was doing was fun and she felt bad because Dad didn’t like to do anything but sit in his chair all day and sleep. Then she asked him if there was anything that he would like to do – any activity that he would enjoy. I asked her if she understood what I was saying…that this would be a place away from here where they would live while I was getting a change for my body to heal. She finally seemed to grasp it. She asked…what about our clothes? Will we have our clothes with us? Then she asked about her computer…she said that she has so much that she can do with that. I told her that she could definitely have her computer. I told them that I loved them very much and that this was a difficult thing to do. I let them know that my siblings were all in agreement that I needed to do this as were our children. Mom agreed that she didn’t want me hurting and I needed to take care of myself, (in a manner of speaking). Dad took my hand and told me how much he appreciated my taking the lead in their care. He didn’t say much. He did ask where the place was. He did ask me when I helped him up from the table if that was too much for me.
I reminded them that Rosie was coming tomorrow and that she was coming to…Mom interrupted and said, “To help with the changes?”
We chatted back and forth for awhile and then I suggested that we take a break from discussing it and they could go watch Andy Griffith for awhile. As they were leaving to head back to their living room, Mom said that it would be really nice if they could see more people…if people would come visit them
Later, when I went to get them ready for bed Mom said that she had been thinking a lot about what we had been talking about and that she thought it was a really good idea. One reason was because that meant that people would come visit them and the other reason was because I wasn’t the only one that had to care for Daddy but she had to do a lot too and that would be good not to have to do that!
This is astounding!!
Tonight I talked to Mom and Dad about them moving into (I didn’t use the word “nursing home”) a place where they could live for awhile so that I could have some time for my body to heal. I wrote a letter to family and friends asking for prayer and informing them of our intentions and why. I was just praying that God would open the door at the right time for me to talk to them about it. Tonight, after supper, Sam had to go to a meeting and Mom and Dad were still sitting at the table and things seemed calm and quiet. I couldn’t seem to get the idea off my mind about talking to them about. Up until that point I had not had any inclination to say anything and hadn’t a clue where to start. As it kept coming up in my mind, I kept praying for the right time, thinking that I would get some kind of comment that would lead into it. I kept saying, “show me, open the door” and I finally got it…the time was NOW!
I had prayed for the right words to say but even more, I had lots of other people praying for me AND for them. So I started out with asking Mom if she remembered how it was when she was so tired that her Dr. told her that she could no longer care for her mother in her home. She said she did. I told her that I am at that point – that I am worn out, that my health is being affected by the care that is necessary with Dad’s needs. His physical needs, like getting him out of bed in the morning, are beginning to greatly affect me.
I told them that I had been looking and looking to find a place for them to stay while my body had a chance to heal. I told them that I was concerned because I am so tired all the time from the work that I do to care for them that I no longer have the time or energy to just be a daughter and do fun things with them. If there were to be somewhere else where someone else was doing to the work for them that needed to be done that I would have opportunity to do fun things with them again and be a daughter instead of a caretaker. I felt like they would have more stimulation in a situation where there would be activities going on and people around them more often. I told them that they would probably find that they would have a lot more company as people would be more comfortable going to see them there than in our house.
First off, Mom didn’t seem to get it. She said that she liked to be active and walk when it wasn’t raining and the puzzle she was doing was fun and she felt bad because Dad didn’t like to do anything but sit in his chair all day and sleep. Then she asked him if there was anything that he would like to do – any activity that he would enjoy. I asked her if she understood what I was saying…that this would be a place away from here where they would live while I was getting a change for my body to heal. She finally seemed to grasp it. She asked…what about our clothes? Will we have our clothes with us? Then she asked about her computer…she said that she has so much that she can do with that. I told her that she could definitely have her computer. I told them that I loved them very much and that this was a difficult thing to do. I let them know that my siblings were all in agreement that I needed to do this as were our children. Mom agreed that she didn’t want me hurting and I needed to take care of myself, (in a manner of speaking). Dad took my hand and told me how much he appreciated my taking the lead in their care. He didn’t say much. He did ask where the place was. He did ask me when I helped him up from the table if that was too much for me.
I reminded them that Rosie was coming tomorrow and that she was coming to…Mom interrupted and said, “To help with the changes?”
We chatted back and forth for awhile and then I suggested that we take a break from discussing it and they could go watch Andy Griffith for awhile. As they were leaving to head back to their living room, Mom said that it would be really nice if they could see more people…if people would come visit them
Later, when I went to get them ready for bed Mom said that she had been thinking a lot about what we had been talking about and that she thought it was a really good idea. One reason was because that meant that people would come visit them and the other reason was because I wasn’t the only one that had to care for Daddy but she had to do a lot too and that would be good not to have to do that!
This is astounding!!
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