Some days I feel so tired and that I am "living 24/7 with death". It sounds awful, but that's how it feels. Things go along ok for a while and then bam! another change and I wonder if we can get through this one and somehow with God's grace we do. Some days I just cry after watching my dh just sit and stare at nothing in particular or not being able to do anything for himself or carry on any kind of a conversation. I wonder, will this last another year or 10 yrs? Sometimes the lonliness and aloneness is almost unbearable. An hour at a time, a day at a time, a month at a time. Every now and then, I see my dh enjoy some music or person and I have to smile for the gift of joy I see. It does no good to complain so I guess people think we are living a good life with a problem that is bearable. The only people who really understand and don't judge are you and I thank you for being here.
Brindle, I often feel guilty for wondering when this will all end. I love and will miss my DH but this is not the life either of us imagined. I know there are people that have it much worse than I but when a change takes place and I never know if I can make it past it I know that I have friends who are praying for me and I feel their prayers and I go on.
brindle, Yes, I DO understand! We can have a good day & bam! one little thing can set him off. Like tonight for instance. Once month we go to my Weight Watchers meeting & once a month we go to my Avon meeting. Tonight we went to my Weight Watchers meeting & then to Wendy’s for dinner. When we got home he asked when we were leaving for the other “function”. For some reason he has it in his head that we go to both meetings the same night. He asked that last month too. Silly me, I tried to tell him that the meetings are on different nights , but he kept on insisting that he always sees the ladies & talks to them. So now he is sitting here sulking. I'm glad it's bedtime & hopefully he will sleep all night.
I understand too, Brindle. Last week was another one of those "bad" weeks. This week seems better, so far. But, when those bad spots come, the loneliness feels overwhelming and, as you said, you wonder how you'll go on doing this if it goes on for another 10 years. By then, I know I won't be able to. I'll be too old to handle it myself. But, most of the time, we get a few more weeks or months when we think, "Yes, if it's like this, I can handle it." And then, Bam, another bad spell comes again. Nothing we can do about it but wait. You're right, though, at least we can come here and not be judged because there is always someone who understands how we feel and someone who is going through even worse things than we are. I read what some of the spouses are through and wonder what I'll do when it happens to me.
I am seeing more changes too that are so discouraging. Just when I allow myself to think he is "stable" something new begins. In recent weeks, we can have just left the doctor's office and started on the way home and he will say something like " well..now the only thing I have to do this afternoon is see the doctor" or we can be almost home from dinner out and he will say " what are we going to have for dinner". Now he wants to now " what do we have that is sweet in the house" ( he has never before been a big sweet eater) or after I take out his pie plate to the kitchen and return he will ask, what is for dessert? Some days it wears me down.
brindle, I thought I wrote your entry. I agree and know exactly how you feel. I too sit here looking at my dh of 48yrs and wonder what he thinks, if he still thinks. He stares at tv not knowing what is going on. Completely helpless and totally dependent, where has that man I know so well gone? Day after day it just goes on and on. I can't imagine what that prison must feel like to him. I pray he aware of all he's lost and hope I can make his lasts days the best they can be under the circumstances. Hang in there, grateful for this site and knowing others understand while those around usthink things are going well.
Mimi, you will read (or the doctor will affirm) taht the last taste the dementia patients can actually taste is that of sweet. Everything else will taste like paper.
Nursing homes will often give the residents sweet pudding FIRST when they feed their patients as it jump starts the taste buds and they will then eat more of their dinner.
Foster had ice cream almost every night for two years. He LOVED butter pecan and chocolate. I doubt I'll ever buy Butter Pecan again. Just the sight of it makes me miss him more. Funny. I don't get that feeling as I grab for the carton of chocolate for me.
Thank you all so very much for your responses. When my dh fell in WalMart the week prior to Thanksgiving, I thought that was it. I had never seen him in such bad condition and was preparing myself for the end. After a couple of weeks, he was a lot stronger and able to move around in the wheelchair again. I don't know what is the most difficult: the not being able to communicate at all, not knowing or seeming to know what is going on; or being completely dependent on me. After his nap this afternoon, he looked as though he could not tell who I was and this seems to happen a lot. He loves his meals and cookies, ice cream, angel food cake (goodies of any kind) so I endulge him as long as he eats what is good for him as well. Some of the spouses are still able to talk, walk and go to the bathroom. Enjoy this while you can. Our changes seemed to happen over a short period of time. I finally took out the porta potty realizing it won't be used again (unless for me). This has been a long 9 yrs. and he is 67. He sleeps a lot more these days - eats, poops, sleeps. How did people manage before disposables and washing machines? Have a good rest of the week and know that I pray for you all every day that God will give you strength and stamina and a good night's sleep so you can wake up refreshed.
brindle--not only disposables and washing machines, I wonder how they survived dementia caregiving before:
antipsychotic drugs antidepressants the Internet support groups
My poor MIL went throught EOAD with FIL in the 1950's and 1960's. Had none of the above--he had to be committed to a State mental hospital, died there of renal failure after an altercation with another patient. When I am really down I think about what she and the family went through; they make my and DH's life look like a piece of cake by comparison!