Caregiving daily and trying to prepare for the future

RetiredTeacher

How do you keep 1 foot in the here and now: care giving, taking care of everything and also tackle more long term things? The cavalry's not coming and I know i am in charge. I take care of DH and all the day to day stuff. I also think about the future, so much needs to be done. Deferred mainenance for over 10 yrs. DH has a large woodworking shop he has not used in 20 yrs. It looks like the munster house, no kidding! Cob webs and years of dust everywhere. He rarely goes out there anymore eventhough 2 decades ago he spent most of his day out there. I have slowly moved exercise equipment out there over the past 2 yrs. First a treadmill to help him walk after a stroke, then more equipment to make it a home gym since we cannot go to 24 hr fitness anymore. How do I help him let go of the things, wood working tools, that used to mean so much that he can't/won't ever use again? I'm not trying to be insensitive but need to do what i can to thin out stuff now so I won't have such a huge job when he passes. Have any of you dealt with this and if so, how did you and your spouse handle it? I did make some progress today when he decided to give his meat smoker to our gardner. He understood he would never use it again and someone else would love to have it. Any suggestions? So much to catch up on.. Looking for advice from those who have been there and done that.

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annie51

When I first retired, DH was probably Stage 4 or 5. I wanted to use my new free time and begin purging the house we’ve lived in for 33 years because I was thinking of the future like you. It was very hard to get him to part with certain of his things if I asked him about them, so I had to get creative and little by little secretly packed up stuff I thought he wouldn’t miss. I didn’t throw it out right away - just waited to see if he’d say anything. Eventually I began throwing things out and he never asked about any of it. Now that he’s stage 6, he’s less interested in the stuff and more open to letting me do what I want with it. But on the other hand, he’s not interested in helping me and is not too keen on my doing things without him, so not much is getting done now. I used to post a lot of things for sale on eBay but now he doesn’t have patience for me to do it when I should be paying attention to him. 🥴 So I’ll be in a pickle when I do have to deal with what’s left.

I take joy in every little bit that gets cleared out, no matter how small. It’s still progress! Then I try to stop worrying about it (not an easy task for me…).

BPS

I told my kids that I was going to write notes and put them in random places that would say things like "Ha Ha now it is your problem" and just leave all the accumulated stuff until I die. In reality I am slowly going through some stuff and doing a lot of donations because I would like to move out of this house some day and will have big yard sell then.

CMC62

I also go through things without my husband around. My husband's tendency to not throw anything away has always been a source of friction, but now I just don't ask. I won't get rid of anything I actually think he will use, or that one of the adult kids will want, but the rest is getting donated little by little. We have lived in the same house for almost 30 years, and we have boxes that came from his old attic and were put in ours! Slowly, I have been cleaning out.

Bailey's Mom

I can so relate to this! My HWD has always been a hoarder…learned it from his mother…and I am basically a minimalist. He has an overbearing personality so there is no way to stop his hoarding…he still goes through the community trash pile daily and brings home all matter of junk. I used to sell things on ebay for him, but now he accuses me of taking his stuff, selling it and stealing the money, so have stopped making the effort. I have been giving anything that I have that might have any sentimental value to family members and throwing out/donating some of my things when I can. Being a caregiver for someone with his aggressive and mean personality is sucking the life out of me, so I am fairly certain that he will outlive me anyway and someone else will be stuck dealing with his mess.

H1235

https://alzconnected.org/discussion/comment/250518#Comment_250518

My mom is a hoarder. I tried to get her to go through things before dementia, she just laughed and said I could deal with it. I have averaged 10 to 12 hours a week for 2 and a half years trying to clean out her house(that’s on top of doing her finances, bringing her supplies and trips to the sleep doctor, dentist, eye doctor etc.) My brother is no help. I’m resentful and and angry.

CindyBum

I tried so hard to be in the moment and doing long-term things at the same. I gave up. I decided it was part of the learning I am going to take on during this ridiculously hard journey. I was a college athlete, so spent much of my life, until now, working toward a future goal. In many ways, that has kept me from being in the moment. If I can walk away from this with at least an ability to slow down and notice and actually enjoy moments, I'm going to take that as a win.

I decided all I would take on was what was available to me - enjoying and living purely in the moment. If it's sitting outside and staring at the ocean with my DW. Great. That's what I'm doing now. If it's sneaking out to garden or clean out part the garage when she takes many of her 1/2 mini naps on the couch. Great. That's what I'm doing now. I've had a landscaping project going for at least 5 months now. It's small and I would have tried to finish it in a few weekends in the past. Once I realized I was setting ridiculous, kind of meaningless timelines on myself, I relaxed into longer timelines or no goals on when I will finish and it's been more enjoyable. I just do what I can and then let it go until I can do more. Liberating!

It's helping me some to have this attitude. Not that I'm not exhausted and stressed out and cry all of the time. But, I get these moments of pure focus on a project and it feeds me. It also keeps me from getting hard on myself for not getting more done, when the reality is, it's terribly difficult to get anything done while caring for a PWD.

Hang in there!

RetiredTeacher

Ty All who posted. I appreciate CindyB posting about being in the moment and enjoying the moment you're in. I'm one who sees a task, plans how to tackle it and implements the plan. Living with dementia knocks that strategy upside down. I do try to enjoy the moments we get both with spouse and a few special minutes for ourselves but I see things that need to be tackled from 20 yrs ago and realize I am the only one to do it. I don't want to leave all of that for our grown kids. It's hard to deal with the struggles of dementia, all daily tasks, enjoying special moments with hubby and also tackling the neglected things from yesteryear. I will keep doing my best for him and myself every day. This disease affects so many aspects of our lives, in ways I never could have imagined. We keep showing up everyday, doing the best we can. Ty for your support.

bjtm1969

I also am a retired teacher with many of the same traits as Retired Teacher, so I can really relate. My husband was in the restoration business for 50 years, so we have many large unrestored projects in several locations with parts everywhere. He was very good at taking things apart but not at putting them back together. His ADHD and probably early dementia made everything a struggle. My husband only goes to his large shop if a friend is willing to tag along. I too have used eBay over the years to market some of his '"inventory." Although my husband is open to selling some of his projects and parts, talking about them 25 times wears me out! I try to only have one or two things that we focus on at a time or I will lose my mind in the process. As someone else mentioned, sometimes things disappear and that works well for some things.

We had a house fire in another state four years ago so we had to move many items that were organized but are not anymore. Unfortunately, my husband cannot remember which part goes to which project or which building houses what. Luckily, he has two friends who are willing to spend time with him and help us sort through and try to market items. But we are just scratching the surface…..another thing that keeps me awake at night. We are in central Wisconsin and the wildfire smoke from Canada has affected us 23 days this summer. That makes getting out difficult but we do our best to enjoy every day. The majestic monarch butterflies are migrating through the area and are beautiful to watch in our garden!! One day at a time and the to-do list rolls over to the next day, week or even month if needed. We need to prioritize things that need to be done before the winter sets in and makes things more difficult to accomplish. I continue to try to learn something new on this site everyday so thank you to everyone for posting and sharing their experiences, thoughts and love. Hugs to everyone.

HollyBerry

Yes! it's one small way I can feel slightly in control of something. Re the overdue house maintenance - I made a list of priority projects, assigned a yearly savings goal/budget, and have picked away at those over the past few years. My logic is, I'd like to get as much as possible done before we have to pay for memory care. Re the accumulated stuff - my first line is, "it's my stuff that has been in the storage room for years and I finally want to get rid of it." Lately she has no recognition of what is my stuff vs her stuff, so it's getting easier. Disposing of the stuff is getting harder, though, since she's no help in moving things, though I was pretty proud of myself for moving a big cabinet by myself with a flattened cardboard box and a lever (I am young and strong! Yah!). My latest goal is to use some of the days when she's at her day program to have ReStore or St Vinnie's come by with their truck and get some of the big stuff, when she's not here to see them.

Chance Rider

RetiredTeacher- I can so relate to needing to handle all the day to day needs, and especially the deferred home maintenance. Before the ALZ diagnosis I started telling my husband that I don’t want his son being burdened with clearing out our house and property. That paved the way for my current projects. Because there’s so much, and the costs associated, I too have a priority list. Honestly, sometimes if there are smallish things he hasn’t used in a while, they simply “disappear”.

Congrats on the progress you’re making! It can be both physically and emotionally challenging.