Everything

persevere · May 10

So this is just a vent but probably one many can relate to. It’s not enough that you have to watch your LO whither away piece by piece and be hyper vigilant 24hrs a day with care and feeding but in my case I also get to watch the house we spent 36 years making into a beautiful home become a wreck. I’ve had to move a lot of furniture and items into a bedroom, have to watch walls become scuffed, floors and rugs become dirty with who knows what and learn to live with chairs and furniture moved out of place constantly, broken lamps. It’s everything. It breaks you down. It’s devastating. It’s depressing. Am I being petty here?

David1941 · May 10

You are NOT being petty - just honest, which is hard indeed. Our best to you in this miserable experience.

Chance Rider · May 10

No, you’re not being petty. It’s bad enough that we watch our PWD decline, but in my case my home is suffering from neglect as well, painting, new flooring, updating, etc. I’ve had to give up on making any headway and just try to hold things together, myself included. None of us asked to be on this journey and we’re doing the best we can. Sending hugs 💜

beachwalker5 · May 10

Your feelings are totally justified. My DW and I have always been "neat freaks". Lately I feel like I'm sharing a home with a hoarder. There are stacks of papers, books and boxes everywhere. Lots of little paper notes in unintelligible writing scattered all over the house. The pantry is overflowing with multiple items that keep being repurchased. We have six containers of bread crumbs in there! #%&$?!!!! Three of them have already been opened! Ugh! And things get put in really weird places and I have to not react or say anything, otherwise a huge fight occurs.

The hardest part for me is not the physical disarray. The hardest part is adjusting my own behavior to our new environment and my DW's new reality in order to maintain domestic tranquility.

annie51 · May 10

Many of us can relate to those feelings. My DH moved furniture around a lot, brought outside furniture inside, twisted a pole lamp so badly that it broke…on and on. Yes it’s VERY frustrating. My mantra became “DIRM” - does it really matter - and I had to say that to myself many times. I realized that nothing he did was irreversible or irreplaceable so it helped me to cope. Sending a hug!

Maru · May 10

https://alzconnected.org/discussion/76001/everything

So far my IQ hasn't withered away, but I can sure relate to the rest of it. Hypervigilant…waiting for the next shoe to drop; catching new stains on the soft furniture and mysterious rings on the wood tables, wiping spills and wondering if some of the drink went under the sofa…a whole glass of beer spilled on practically new carpeting that just missed all the wires going to a pc. There is no point in saying anything. This is the new normal and is only going to get worse as DH loses more brain tissue. I am learning to just accept it all, but I do know that the constant hypervigilance is doing a number on my body.

harshedbuzz · May 10

@persevere

You just said the quiet thing out loud.

You are entitled to feel what you feel. It's likely a mix of sadness that your DW is now oblivious to the beautiful home you created together and frustration at being homebound in what now feels more like a one-bed nursing home.

FWIW, in stage 8, one of the first things mom did was totally remodel her house. It was new-to-her because of the move back north, but she remodeled, renovated and redid every square inch of the house and gardens because the scrapes, dings and stains were reminders of such an unhappy time.

HB

tonyac2 · 12:51AM

I get you @persevere. And I don’t think it’s petty. My DH and his wheelchair has totally destroyed our kitchen cabinets. When I point it out to friends they say, “oh that’s just cosmetic.” They don’t get that all the damage to the cabinets, woodwork, doors, etc. is a constant reminder that dementia lives here and it will do and take whatever it wants. I know in his right mind he would be furious about the damage he’s done. On we go.

persevere · 2:22AM

https://alzconnected.org/discussion/comment/272120#Comment_272120

yikes. But you’re right about ‘dementia lives here’. It casts a giant pall.

blacksparky · 2:35AM

https://alzconnected.org/discussion/comment/272120#Comment_272120

We are not yet at the walker/wheelchair stage and not looking forward to it. I agree whatever stage our LO is in it is a constant reminder that dementia sucks.

Dan520 · 2:45AM

I can't remember seeing anything petty on this forum. Sad as hell! And I can relate to a lot. But NOT petty!

trottingalong · 5:02AM

I can so relate. My carpet is worn, tables stained, a newer couch looking pretty rough and I can’t do a darned thing besides clean as much as I can. My home needs a deep cleaning. Since spring is here I decided to design and put together planters in my front yard. I have an acre and a quarter. This is my summer project. It keeps me sane.

Biggles · 5:06AM

im so glad @perservere, that you vented. Watching my DH withering away bit by bit is sole destroying in itself and it's not the house because we downsized to an older home and it's taken so much of my energy to try to “keep up appearances” ha ha not that I really care anymore, we gave up our beautiful home of 30 years 4 years ago, it's the conversations with some of our health workers and one or two good meaning friends and how they speak, the discussion about it incontinence, wheel chair access, food, swallowing techniques, the silence that reigns surpreme because of Aphasia, being tired because you are not getting enough sleep, dealing with your own decline as in a bad back, failing eyesight it's just the whole dam thing and yes Dan620 it sucks!!

howhale · 10:14AM

You are definitely NOT being petty. Nothing we experience or give up as care givers for our loved one is petty. It is hard, maybe the hardest experience we will ever endure but we do it for love. The damage, disruption, frustration, etc., etc. are just the immaterial annoyances that go along with it. You sacrifice it all for your loved one. I lost my DW nine months ago and now, in the aftermath, am beginning to work on the ten years of neglect of our home. Whether it is putting things back to their normal place, repairs inside or outside, having things serviced which could not be done, on and on, allow yourself time and do it at your pace. You are giving attention to the one and only thing that matters now and that is to help your loved one live their best life in the midst of this horrible, horrible disease. As someone else said, there is nothing petty about anything you do to protect your loved one. Vent with us all you need. Do it often, we are here and we understand like no others can. Never hesitate to just unload here often, I did and everyone supported me.

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