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
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