Every moment seems to be a challenge

tryingtodurvive · May 13

I think I’m just needing to share what I’m feeling. I know there are no answers. My DH is stage 6 Alzheimer’s with PPA as well. He’s 73 and I’m 62. He is still sweet most of the time but of course gets frustrated with me sometimes. I try so hard to follow all the rules regarding just answering questions over and over again but there are days I just feel like I’m falling apart. He follows me around and constantly (like sometimes 10 times a day) says he has no money. We go through the whole situation about his money. It’s always something he gets obsessed about. He says he’s sorry about everything even though there’s nothing to be sorry about. He talks to himself and hollers at the tv so we can’t even watch tv anymore. We go somewhere almost every day. He’s always ready to go somewhere even if we just got home. I know everyone feels this but life just holds very little fun anymore. The best parts of every week is when we go to church. I just want to be somewhere by myself and breathe. I still love him but not in a romantic way and that makes me feel so guilty. He can’t perform any tasks anymore not even brushing his teeth out putting on his clothes. Every meal is a challenge. Well I’ve finished venting for now. I know we’re all in this mess but sometimes I feel so alone.

Hope5757 · May 13

I’m so sorry.

I’m a daughter in law caregiver but we all share some of the same frustrations. We also share the same regrets as we’ve all responded impatiently or in anger. Give yourself grace.

I’m fortunate in that I can leave occasionally as my spouse is here too. And we recently hired an aide for 10 hours a week.

If at all possible, please start making respite plans now. Is day care possible? If not, can you hire someone for a few hours? Hospice offers in home health care paid for by Medicare.

It’s so important that you get help now as it gets harder as the LO progresses.

Please feel free to vent. This is a safe and supportive place.

GiGi1963 · May 13

I've experienced the same day to day existence as you. After awhile it drags you down and it's very hard to feel joy. I did place my husband in MC when he could no longer do anything without my help. His anger and incontinence pushed me over the edge. It has been two months but I still feel guilt for not being able to stay the course till the end. I can't say it is better now. This is a no win disease. Please take care of yourself too.

Jeanne C. · May 13

You're definitely not alone. Vent when you need to. And try to find some small pleasure for yourself. No joy isn't sustainable.

I try to find some time each day to read or even just take a few deep breaths on the back deck. I've also found that my husband responds really well to music so I make sure to spend some time each day singing along with him to the Beatles station on Amazon or "kitchen dancing." There is some joy in connecting with him in this way.

Hang in there.

trottingalong · May 13

Some days I feel exactly the same. Yesterday was one of those days. My DH can still dress himself, brush his teeth, etc, but his need to be with me, his inability to comprehend so many things, and the fact everything falls on me, is lonely and overwhelming.

sfrsythe · May 13

please feel free to vent. I am just starting this journey. My DH is still where he can see he’s slipping at times. Breaks my heart and then there’s the shadowing because he doesn’t want to be alone. I know how overwhelming that can feel. You’re a wonderful gift in his life.Be sure to get some respit care. It will help.

midge333 · May 14

I know it is a cliche but I think we all need to learn to be kind to ourselves. For me, I struggle with giving myself the grace that I freely give others. What we are doing as caregivers is incredibly hard and we all feel tremendous guilt when we feel like we don't measure up. Be kind to yourself! Easier said than done!

wose · May 14

I am so sorry and I am with you in spirit. This is my DH almost to a T. The anger and agitation is the worst. And also, he just wants to be going somewhere all the time. It’s so hard to manage every day living, trying to get it all done and then to be told we never do anything anymore. I journal a lot and lock myself away in the bathroom(like right now) to read and listen to music. Right now we are off to get corn even tho it’s May and we live in the north. Can’t change his mind about that so maybe we’ll go look at the empty cornfields for the day💜💕

OhDear · May 14

OMG, I am so relieved that I'm not the only one - My DH is also like this and it is so difficult. I too lock myself in the bathroom and try to breathe. I get told we don't do anything anymore - I tried planning all sorts of trips that, once started, he thinks are ridiculous. I realize now that simpler and familiar is better - we too visit farms and gardens off-season again and again, but at least I can join him in the joy or disappointment.

Denise1847 · May 15

https://alzconnected.org/discussion/69200/every-moment-seems-to-be-a-challenge

What we as caregivers are going through is one of the most difficult times of our lives. I feel your pain for sure. I am so tired most of the time, angry, feeling like a maid/nurse/babysitter 24/7. And then there is so much guilt for these feelings. I think, "How can you be so selfish when he is literally dying, his sense of self is slowly disintegrating. My mind is so pre-occupied with worry about what is coming next, what tasks I need to do to keep the household going that sometimes I just can't think straight. Thank God for my rescue dog that brings me immense joy and distraction. I say these things for you to know that you are not alone. I am so sorry and I wish it could be different.

DTSbuddy · May 15

To Tryingtodurvive: The feeling alone, missing the guy he used to be, is so hard. I'm not proud of this, so crass and materialistic, but sometimes I sing a song to myself, 'A thousand dollars a day, a thousand dollars a day, take one down, and turn it around, a thousand dollars a day.' It helps me put measurable value on my efforts. Or, it makes me feel more like a caregiver, and less a grieving wife. I figure this is about what it would cost to hire the 24/7 caregivers we would need if I were not doing this. I like thinking about options for using that money later, or how our kids might can it. It helps me feel less hurt when he is in manic mode, disoriented, oblivious, stubborn, messy or embarrassing.. We still have fun together sometimes, but I can't forget what I'm doing and relax, and I can't plan to do anything. I need to get more sleep. Take care of yourselves.

JeriLynn66 · May 15

"How can you be so selfish when he is literally dying, his sense of self is slowly disintegrating. My mind is so pre-occupied with worry about what is coming next, what tasks I need to do to keep the household going that sometimes I just can't think straight."

@Denise1847 You nailed it. 💔

LJCHR · May 15

All of these comments apply to me also. Try as I may there never seems to be a day that I'm not tired and sad at some point. We still go on "errands" every day - but then we come back to the same routine. I can't even leave him to shower alone because he floods the bathroom. Twice in the last week.

SSHarkey · May 15

My husband made a comment the other day that we don’t do anything with friends anymore. (We used to host people for dinner on a regular basis. But rarely getting return invitations. People are just so busy) When he said that, I told him I can’t do that anymore. Cooking for 6-8 people is work, along with the house prep involved. I’ll gladly do that for my family. But I’m pretty much done with dinner parties. Then I reminded him how we regularly meet friends after church on Sundays for lunch. I’m physically worn down with RA and fibromyalgia. Add to that everything else, and I really don’t want to do that anymore. I think he got my message. He didn’t say anything else.

Denise1847 · May 17

https://alzconnected.org/discussion/comment/209199#Comment_209199

Amen to the dinner parties.

Sweetfire · July 4

https://alzconnected.org/discussion/69200/every-moment-seems-to-be-a-challenge

Oh my gosh, this is my life right now! I identify. I know if I put my DH in memory care at this point it would devastate him, but honestly, I dream about having more than a 4 four-hour break a week (when a caregiver takes him out of the house). There are times when I feel I am just losing my mind. I wonder at what point I should start thinking more about my long-term health (I have ME/CFS and Fibromyalgia) and move him into full-time care. It is my chronic illness that makes this situation with my DH so much harder to deal with. Thanks for sharing your situation…it helps.

Every moment seems to be a challenge

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