Feeling cheated

@bellaskye25

I understand the "cheated" feeling. I felt so trapped for the first couple of years after my husbands diagnosis. Before the the official diagnosis, I was seriously considering leaving him. Then he was diagnosed. Talking about being trapped! I recommitted to the marriage and am really glad I did. But to feel a bit more in control, I have plans for when we pass through certain gates. These gates may never come to pass, but I feel like I am controlling my own destiny to some extent, and that makes it easier to just be in the moment and not think about the future. It's hard to explain...

I have posted previously on other threads but today has been especially hard. My husband who is 9 years older has had prostrate cancer which recently returned so he is on Lupron, in the last year he fractured his back 3 times so he is walking bent over and he has what I believe to be dementia. I have been putting off taking him to a neurologist because he is a happy person and although he realizes he has memory loss I don’t want a doctor emphasizing this, we have an appointment on Tuesday. We have never mentioned the word dementia or the fact he has cancer, I never saw the point in worrying him. Lately though I am exhausted the weather here is like spring so I like to be outside working however when I come in all the things that I didn’t do are still waiting to be done. Don’t get me wrong I absolutely love my husband he helps as much as he can does the dishes, garbage fills the keurig etc and sweeps outside when I am working. But he misplaces everything and I find that exhausting looking for everything, he also is now using words that do not belong to what he is saying, he also thinks if he rinses the dishes he does not have to wash them with soap if I mention this he gets angry. He will not wear his hearing aids so I get hoarse. We have no family here and no kids. Someone gave me the name of a daycare that I am going to call but I know that he will not like that because he wants to be with me and really I want to be with him. I’m so tired and because I am having a really bad day I think is this how the rest of my life will be like? I hate myself for thinking that but I am so tired. Just so you know you are definitely not alone. I also think what if I put I in some type of day care and something happens to him and I’m not there? I could never forgive myself if I thought he was asking for me and I wasn’t there?

@cyds I get that, I also think of the future and traveling to visit my friends in the UK etc I just hope I am still able to do it. We have to look forward to something special or we become non existence just going from one day to the next. It will be hard though doing it on my own without my husband if that became what the future holds.

No, Bella... please don't feel guilty about getting away for periods of time during the week, or asking / hiring others to assist with your hubby.

Simply... you NEED regular respite periods to maintain your own well-being to enable you to continue helping him. This is a CARDINAL rule of caregiving.

All the best!

/LarryG

Your comments are pretty much in line with others! I know now I need to hire help.Thanks for your kind words.

I hear the same things, get help from whom? We have no family and most of my friends have their own issues to deal with being in the same age as we are. My husband is 9 years older than I am. It’s a lot to deal with lately my husband wants to go everywhere with me even if he doesn’t get out the car. Today was a bad day, the weather has been pouring down so I decided to go out early and get bagels and do some grocery shopping all went well until I came out the grocery store and had a dead battery luckily the local mall has security and gave me a jump to get home and then I called AAA. My husband has hearing aids he won’t use so now I find my voice is hoarse all the time, he keeps putting tissues in the laundry hamper, who knows where anything could be in the kitchen and he always takes my black pants thinking they are his and I have to spend a lot of time looking for the above. Just to name a few I find I have to be 10 steps ahead and as much as I would like to leave something out for a minute I know whatever it is will disappear in seconds. Minor I know but the other day I was cooking and as soon as I put the spatula down he took it and washed it before I even realized it was gone. My patience is not good anymore and since I have to repeat things 3 times my voice is getting worse. He saw a neurologist finally the other day, I asked him not to mention dementia but say it was a normal test for the elderly, the first thing out of his mouth was your wife said you have a memory problem, I also told him not to mention his cancer and that was another thing he said but I interrupted and changed the subject as Dan doesn’t know he has it. Dr ordered a mri to see if he had had a stroke or just what it will show and if medication might help. Not sure we will try that he is already on Lupron for his cancer which has side effects although he seems to be doing remarkably well on it.
Well! Enough of my whining for one day. Just take it a day at a time my girlfriend goes in the bedroom and cry’s.

@jeanadair123
Your post couldn’t have been written by me, almost word for word. If knowing there’s someone out there that feels your pain and can tell you you’re not alon, then my reply here will have one it jib. All we can do is take bits an pieces of advice that these wonderful people give us and take it one day at a time. I’ll send a mental hello every single morning to you..we are in this together and we will come out in top. Obviously you’re strong like me, and even though we’re worn to the bone at end of day, We need to take pleasure in any little activity or diversion whenever we can without one ounce of guilt and tell ourselves it could be worse. And in the end, we will never feel guilty for not long the right thing.

@jeanadair123
Hello:
For your own sanity and self-preservation you simply must take time for you.
My husband did not enjoy his first experience at respite care. The owner suggested I bring him more often so he gets used to being there and feels more comfortable.
Yes, your husband will be confused and wonder where you are at. You mentioned something may happen to him while you're away? Well, find a place where you know he'll be safe, cannot leave on his own, has activities and companionship.
My husband called me three times the first time I dropped him off, once the second time, and hopefully zero times the next time he's there.
You must do this for you so you don't fall apart or have a breakdown, then you'd be useless to him.
Recharge your batteries so you're better able to deal with the constant attending to needs.
Good luck! 🌼

@judimahoney If we decide or when we go the phone won’t be an issue since he can not remember how to use his, most of the time it is dead. More than anything what I need is someone he knows who could stop in and say high. People offer help but never give you their phone number. 😂 I find that Hilarious. Thank you for your response I’m not sure at what stage he is right now to leave him?
We were at the doctors today it was pouring down with rain so I said wait for me and i would get the car as I pulled out another car was trying to park so he ran towards it and tried to open their door. I can’t imagine how they felt? As I write this I am smiling and wonder what will be next? Also he doesn’t wear his glasses either he said it was the same color car as ours.

I know women who appear to have been so loving and kind as their husbands went through the process of dementia. Of course, I can't know what was really going on with them. I do not feel loving and kind. I feel crabby, angry even, and exasperated much of the time. I'm getting frown lines. Most of us have probably heard the story of the man who visits his wife every day in memory care even though she doesn't know who he is. He explains that's okay because he knows who she is. That probably won't be me, but who knows. Have you read the"Thursday Murder Club" series? Elizabeth is so patient with her husband Steven as he slips into dementia. That isn't me. We've been married for 58 years and still I can't rise up to that. I don't like myself. Is there a question here? No, I'm just venting too. But it does help to know we aren't the only ones.