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So much to do so little ____ !


RLT

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Well, here sits the queen of procrastination. There are so many things I needed to do this week so I keep putting off calling the Ombudsman about Dick’s care in the nursing home. I have spent hours talking to the staff and getting his summer clothes photographed and printed up a detailed inventory. I gave multiple copies to the nursing home with a list of all the items that have been lost since January. Now I will see how long it takes them to reimburse me for those losses.

 

As to care, I must confess that I have neglected Dick a LOT this week. With three girls home for the summer and starting physical therapy for myself, it seems that I do not have enough hours in a day much less the energy necessary to make those hours effective. I have only gone into see Dick every other day at times. I feel so guilty when I do this but then mad because I feel that way. My emotions feel I should spend more time with him daily but my mind rebels that I cannot do it all.

 

One of my most time consuming crises hit on Friday. My PT was in the pool that morning so I pulled on my swim suit instead of dressing. I then proceeded to get Dick’s clothing inventory printed out. I had my phone next to me at the computer and since I had no pockets slipped it into the top of my suit temporarily. Busy trying to be efficient I forgot the phone until I took off the suit after therapy!!! No amount of phone CPR could bring the poor thing back to life. The next day (day before Father’s Day spelled PACKED Best Buy) I had to get a new phone. Since my youngest’s phone was dying I thought I’d go ahead and get her a new one as well. I had just been playing with my oldest daughter’s IPhone so decided to go ahead and go with a Smart Phone (as a PC person I went with an Android rather than Apple). It took several hours. Then of course exhausted I spent the rest of the day playing with the new thing!! Well of course the girls all loved the new phone and two of them decided they too wanted to upgrade to a smart phone so back for an instant repeat on Sunday. In the end all four of us had new phones to play with. This was rather typical for the week.

 

So you would think that a new phone would be a great thing to show off and talk about with Dick, right? Wrong. This week introduced a brand new bump in the road with Dick’s dementia. The previous problem of thinking of things to talk about disappeared. Each visit offered ONE topic that took the entire conversation each day. I drove me nearly crazy! The day I tried to show him the phone he had been watching one of those shop at home shows (I think they should be banned in nursing homes!) and fortunately I had picked up on what was being sold before turning off the TV. It was NoNo which I guess removed unwanted hair. Dick would repeatedly reach out feel my arm and ask, “Did you use it?” No matter how I explained no I didn’t use it it was just on TV his mind was stuck on that topic alone. No matter what I tried to redirect his thoughts to we always went back to, “Did you use it?” Another day I had just come from an appointment trying to get myself set up with a CPAP. He seemed to grasp the whole concept of what the thing was for. And I had expressed that I really believe he should have had one all these years and moved on to explain that he would need a full mask covering nose and mouth like my mother has. In doing so I had used my hand to show the location of the various types of masks so I knew that his mind was popping back to that topic when he would show me on his face where he needed a mask to fit. Yep, that was a two hour conversation! The humor of the situation gets me through it but there are times when I cry because I have nearly lost all ability to talk about my life with my husband.

 

Dick’s resentment of my daughters seems to be increasing. This is a painful thing for me because the resentment is a two way street. Dick has always been a part of their lives. They knew him as Uncle Dick and at one time he was the greatest person in the world to my youngest two especially. They are the ones who have taken the change in his health the hardest feeling stroke killed their Uncle Dick and left another person in his skin only now even his body has changed. Anyhow, when told that my oldest daughter and granddaughter will be here soon his response was, “That’s a real shame.” Bottom line I feel caught between my kids and my husband; alone between two alienated sides. I have plans to bring him home for July 4th as well as having my parents over so we have the whole family together. I am increasingly concerned that he will not be able to handle having all the girls around.

 

All that we can be sure of is that there will be changes. Sometimes those changes are improvements and I celebrate those moments. My goal is to learn how to take care of myself and not be quite so absorbed in caring for Dick and the girls. One thing I have learned is that I cannot control things. That doesn’t keep me from trying though!

 

Ruth

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Ruth: you are feeling guilty. I for one, applaud you for delegating your time the way you have. But, honey, in all honesty I know exactly what you are feeling! Please keep in mind that Dick's care is in effect your respite as well. If you are not healthy and strong, there is no way you can take him home, especially now with the dementia progressing.

 

As far as the conversations, I think you should be pretty proud of yourselves for being able to have a two hour discussion. Bruce too watches the shopping channels, but mostly it is sitcom reruns that even I, who watch no TV, know the dialogue. It makes him laugh, no matter how often he has seen it and for that I am greatful. He seems to have little joy these days. You know, in your heart, that there will come a day when Dick will regress into himself, so relish whatever conversation you get, regardless of how insignificant it seems. It is interaction and you are still very important to him in wanting to share with you.

 

Take your family time as it comes and make decisions as to the last interaction. It may just be too many people and too many conversations going on at one time, that he can not keep up and therefore is tiring and frustrating for him. You will know. Personally I am impressed that you are considering a home visit and making him understand that he is still a crucial part of the family. In his heart, he knows that is true and is thankful that you recognize that and are willing to make him a part of it. Best, Debbie

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Dick is mentally going quite rapidly right now. Vascular Dementia is so unpredictable though and he can come back a bit to. In any case I try to make the memories while I can. I guess sometimes it is more for me than for him at times. He does love to get out of the nursing home though.

Ruth

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Ruth, Ray's vascular dementia is worsening too and for the last two weeks it has only been "yes" or "no" to maybe every third question. I don't know how the therapists are making out with him as he can't remember that anyone at all has been to see him and will tell me "no" if I ask. I check with staff and he has had the doctor, one of the therapists and two other visitors.

 

I am not feeling at all optimistic about how things are going. We have three children, one away down the south coast will come up in two weeks for a few days, one tells me he is too busy after a visit in which Ray did not speak to him and that leaves Trev and he is job hunting again.

 

I wish we could see a light at this end of this particular tunnel.

 

Sue.

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Sue, I believe Vascular Dementia is far worse to deal with than the strokes which orgiginated it. I always said there was hope after stroke but that hope dies with VaD. But that isn't the whole picture. There are times when sickness hits that we think we have lost them only to have an upswing in cognitive ability in a couple of weeks. None of my children (5) help at all with Dick so I understand the frustration and hurt it can cause not to feel they support you. I try to understand each person's situation and realize that very few can handle this disease. While they don't help with Dick my girls are very supportive of me. Remeber that we are very strong ladies and have come through a lot. One of these days you will be on the other side of this tunnel.

Ruth

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