Life is getting harder...

RetiredTeacher

Life is getting harder and DH isn't as far along as many of yours. I should have known better but we went to Costco together today. DH uses a scooter cart and follows me. Today was just so much harder. He had to use the restroom and barely made it through checkout but he made it. I took groceries to the car and then picked him up storefront. First time today he did not dress for the cold weather and was complaining how cold it was. He can't help carry items into the house because of poor mobility and the threshold step. I Put away everything at home, cut up and vacuum sealed chicken, pork chops etc. It all took so long. I went to start the truck we rarely use, battery was dead. AAA came and jumped it. I couldn't find the second set of keys for it so it could run in the driveway locked for a period of time unwatched. I was getting very frustrated and hubby asked if I had ordered a new seat for his etrike. Took tools out and fixed that too, Just so tired of all of this...Life used to be so easy, now it's only hard and harder. Ive been busting my butt since 8am without a break. Im tired, exhausted, frustrated, angry and becoming resentful. I Wish I'd bought a bottle of wine at Costco. How do you folks cope when days are like this one or for many of you so much worse? I think it was the last joint trip to Costco together. It's just getting too hard for me. Sorry for venting.

Call me Gram

I picked up 2 bottles of wine at Giant Eagle today. Too bad you don't live next door… I'd meet you in the driveway. ❤️

RetiredTeacher

That sounds wonderful! We are going out to lunch tomorrow and I'm likely to find a store on the way home. Ty for making me smile today. Such simple things are appreciated.

Quilting brings calm

I knew it’s not available at Costco … but have you considered ordering groceries from an area store online and then using their curbside pick-up? Some even offer delivery. I’ve not tried delivery but I’ve been using curbside pickup for a while now. I got used to it during Covid and I’ve gone back to it now that I have mobility issues. It cuts down on Impulse buying too.

Lgb35

life is getting harder here as well. DH is about to lose his drivers license which means he will have to retire. He is 62 so it’s time. He is angry about the change and his child like response is stressing me out. I constantly feel exhausted and worn out. He is extremely difficult to feed. He asks me every time he wants to eat something if I have anything he can eat. Yes but the real question is what will he eat? I can count on frozen cheese pizza or frozen burritos. He still has his mobility, when he talks you wouldn’t know how bad he is. It’s hard and I know we are early in the process

SDianeL

I used Walmart pickup early in my DH diagnosis. Then I switched to Instacart and had them delivered. I also got housekeeping help every 2 weeks. We then stopped going to restaurants because it was too overwhelming for him. Instead I ordered delivery of his favorites once a week. I know how you feel. Everything gets so hard.

Goodlife2025

I get it, For some time now I have come to the understanding that it will be the last time we do "that" together. Process honey from our bees, cleaning out the gutters, putting up a Christmas tree, and anything after 3pm on any given day. It all has just become too hard what used to be the normal activities are now filled with confusion, aphasia, and balance issues. Hang in there Retired Teacher.

Belle60

Sounds like a day in my life! Definitely getting harder. And I am still working but it is getting harder to work a job and take care of my husband. I just recently started using curbside pickup for groceries and have also used instacart. So much easier. I have become a master as fixing everything around the house. At least he used to pump gas(when I set it up for him) but the last few times; he just sits in the car so I now do it. I know it doesn't sound like much but it is a change. I am tired.

marier

Oh yes life gets harder with this disease for sure! First it was trying to keep DH from fixing things or doing things around the house because he made things so much worse to doing everything myself or finding qualified repair folks. Now he is totally disabled, barely walks, incontinent and doesn't speak and sometimes combative.

Instant cart, curbside pickup, Costco delivery, cleaning service, VA and Hospices all help tremendously. It did take me awhile to admit I needed help but I am slowly getting there. I am also doing more self care when I can.

I feel your frustration and sending you a big hug. Glad you came here to vent. It helps.

Jgirl57

I sure do understand your fatigue with it all. When I realized we could no longer shop in stores it was very sad and it hit me pretty hard. I am now relieved and settled into curbside pick up at the stores. The mind boggling of trying to get through all the unexpected smaller struggles is harder sometimes than when the big declines happen. Tomorrow is another day…..

howhale

When my dear wife became unable to venture outside the home to grocery shop or most other things, I used delivery and/or pick-up and then it became even more difficult to even take her along. It was then that I hired caregivers to sit with her for a few hours. It started out as just a couple days a week to give me a break to go to the grocery, doctor, or just sit quietly. As her condition progressed it was necessary to increase the caregiver support. I was lucky to find extraordinary people who lived nearby to assist. It only gets harder as the loved one's condition evolves. Now being on the other side I will tell you that as much as being her primary caregiver made me think nothing could be worse, the other side is far worse but in a much different way. Hopefully you can find some local, nearby help who can start slowly to give you a break. You have to become infinitely creative and adaptable to serve as the caregiver for this nightmare disease. But, as bad as it seems and gets, please find time to savor every moment when he smiles, touches your hand, acknowledges you, thanks you, etc. for all too soon, that is all any of us will have left. The best of luck to you and all the others here who are truly amazing loved ones who are sacrificing themselves for a loved one.

Maru

https://alzconnected.org/discussion/75057/life-is-getting-harder

Yep. Welcome to the world of being Caretaker. Now, all responsibility for everything falls to you. Even if your DH was able to do some chores, you couldn't depend on him to do them.

How i cope? Prayer. Deep prayer. I look back at my life and our almost 67 years together and I remember all the times I was a horrible wife, times when i hurt him and I realize that God has given me a second chance to be the person that I wanted to be, that I was made to be. When my DH tries my patience, when I am overwhelmed I say a short prayer…Jesus help me …or some such.

And, I make sure that somewhere in the week I have several hours to spend doing something that gives me joy. I am an artist and even 2 hours a week is enough to give me what I need. When the time comes when DH will be more demanding, I will either have one of the kids come and be with their dad for a bit or hire a companion. It is critical to take care of your needs as well as his. I wish you good luck (and send prayers) in your journey.

Chance Rider

https://alzconnected.org/discussion/comment/263077#Comment_263077

I have the same issue with finding meals my husband will eat. His neurologist recommended a Mediterranean diet… great but my husband only wants th frozen Costco tamales, Asian veggie spring rolls, and sweets. Lots of pastries, muffins, etc. To avoid confrontations I buy what he wants. He’s late stage 4 but showing some signs of entering 5. Executive function has really declined but he can talk up a storm and fool most people. I feel bad venting because so many have it so much worse.

Peace needed

This is my first time on this app. And I came across your message and I feel in your shoes…. My husband is facing a drivers test in the near future because of doctors reporting…. He’s coming unglued and angered . He also seems paranoid with everything and negative towards everything. We are in our 60s and retired and ready for the good life. This all has put such a stress on our relationship. He even feels Im having affairs and he’s very un trusting when I use my phone or leave the house….. Hence he wants to do everything with me. Feeling like I’m ready to jump all the time, my nerves are on fire…

Cjcann

https://alzconnected.org/discussion/comment/263077#Comment_263077

https://alzconnected.org/discussion/comment/263077#Comment_263077

This is my first time here and your post sounds so much like what I'm going through at this moment in life. He was just diagnosed 3 months ago. He's struggling so much with this as an I. I just retired last year and we were planning traveling and buying a new house and having his mom come and live with us. Our whole life is turned upside-down. We always were going places , doing things and had so much fun together. He still drives but is starting to make me a little nervous he rarely likes to go anywhere unless I'm with him and says he is fine with me going somewhere but I can tell he rather me not. My son , his stepson lives with us and they are very close and if he is home he's ok but if we are both gone he tells me he was horribly anxious. I am very understanding and reassure him that it's ok and we are in this together. He is still very functioning and him self at times. Then like today he can't relax and is pacing and very short when I ask him something or try to help. It's just a lot and I really need a place like this to talk to others dealing with the same things

Call me Gram

I have been listening to an audiobook titled, Travelers to Unimaginable Lands, by psychoanalyst Dasha Kiper. (It was recommended on a message board I visited, but I can't remember who mentioned it - and it may have been on the MayoConnect board, if not here.) The book is somewhat heavy in philosophy, which is not something I particularly enjoy, but the message has been very healing for me.

Kiper explains why dementia caregiving can feel especially isolating, in a way that caregiving for physical illnesses like cancer often does not. With cancer or ALS, even when the illness is devastating, the caregiver and the patient usually remain in a "shared reality"… together they can acknowledge the diagnosis, grieve together, commiserate, and face fear and loss as one.

However, dementia destroys that shared experience. As memory, insight, and recognition erode, the caregiver is left fully aware of what is being lost … while the person with dementia often cannot recognize it, will likely deny it, and will often misinterpret events or issues.

This leaves the caregiver grieving alone, making difficult decisions without connection or input, and carrying emotional and ethical burdens that cannot be shared with the very person they are caring for.

Kiper’s insights help explain why dementia caregivers can feel so profoundly alone, while others around them have no idea why their experience feels so different or isolating.

Call me Gram

Thank goodness we have this platform where we can have a shared experience… I know I say it often, but I am so very grateful for all of you, for the wisdom you share, for the care you give, for the trails you are blazing, and for the laughter and commiseration I cannot find elsewhere.

THANK YOU!!! ❤️