when do you stop doing normal things?

wizmo

DW is well into stage 5.  I have to make nearly every decision, frequently
assist with getting dressed, assist with all housekeeping, remind or
prompt her doing almost anything.  Making a peanut butter and jelly
sandwich is just beyond her ability to do by herself any more, even
if I open jars, put out the ingredients and a butter knife.

We led very active lives for a long time but almost any physical
activity now results in complaints of too hot, too cold, too hard,
don't like to put on sunscreen, don't like to wear specific clothes
or shoes, just don't like it.  I ask what else she wants to do instead
and she doesn't know, has no suggestions.  We have already scaled
back difficulty and duration of walking/hiking/bicycling.  Is this
just the point where we quit doing normal things?

Rescue mom

I think it largely depends on you—your ability to help or do things for her. Or how much help you can get from others, to do a lot of things.

Some active pastimes/things we enjoyed, like boating, we had to quit doing fairly early because I was not strong enough to do everything myself, with no help.

Other things, like restaurants or concerts/events, may depend more on your level of patience; how much can you reassure her, guide her behavior, keep her comfortable and safe. (Dealing with diapers or toilet issues in a public space comes to mind, or keeping her still and in a seat).

Or you don’t spend a morning at the museum, you spend 30 minutes.

Of course at some point, a lot of things you used to do, will become no longer do-able. But some people here have kept going with many activities, maybe scaled back a bit,  for an amazing amount of time. Travel, in general—having others along to help, or making sure you’re in a understanding group,  can make a huge difference. 

Crushed

DW was a physician computer expert and an expert photographer  I traced her downward   slope for 6 years interms of her technological skills  until it just became too painful.  By 2016 I had to put in her earrings, pick out her clothes and help her get dressed. I always did all the cooking and laundry.  But we still managed to go to South Africa . By 2017 was psychotic and any travel was very dicey.   late that year she went into memory care .  That was 5 years ago .         
Its a downward spiral

Faith,Hope,Love

Hi Wizmo.  So sorry you're having to go thru all of this.  I'm sure there are a lot of others who could answer this better than I can.  But your post sounds like where my DH is right now so I thought I would respond.  I do make all the decisions now, he can dress himself, but doesn't know what to wear.  If I don't stand there and tell him what to put on, he may end up wearing two t-shirts, no socks, you get the picture.  Most days he refuses to wear pants and wears pajama bottoms all day.  But we don't usually have any company, so it doesn't matter.  Even if we had company, who cares.  I have to remind him to eat.  Then he constantly asks me if he ate or not.  He refuses to go outside to do anything and would prefer to sit and watch tv all day.  In his case, he has auditory hallucinations (we're working on that one with meds) and he usually tells me that God says not to go outside.

So, I said all of that to say this.  What I have done is to find things that he can do inside.  I've also tried to find things we can do together.  I did a lot of experimentation and found that he likes jigsaw puzzles.  He used to be able to handle 750 pieces but as his disease has progressed 300 pieces is his max right now.  I've found some real easy exercise dance videos on Youtube and we do them together.  It makes him laugh and usually is a lot of fun.  He also likes to work on word search puzzles.  We tried coloring, but that wasn't his thing.  I guess what I'm trying to say is that I've had to adjust my expectations according to what he's able to do.  

I hope this helped.

Rescue mom

I was actually thinking about Crushed, and his travels with his DW, when I wrote my earlier comments. What he did traveling with her was amazing to me. 

We loved to travel, went all over the world. But when DH reached maybe stage 5, we had to stop. He hated being away, could do almost nothing for himself, and I was simply not strong enough to do everything for both of us. Friends can-and did—help for a couple days, but none even claimed to enjoy it.

We were big foodies, always the newest, most exotic restaurants. Then he couldn’t handle a menu. Then he couldn’t decide. Then he got upset about crowds rushing around. So we went to more basic places, we went at slow times. Etc. Then he didn’t want to go at all. Now “normal” is staying home (or I go with friends). Anyway, it’s gradual. But all that became normal.

You have a new normal now. It’s what this disease does.

The decline is usually gradual, at least in Alzheimer’s. From what you say, you’re already doing things that weren’t “normal” before. 

M1

Wizmo, my partner was well into stage 5 when she went to MC in March.  There were no more normal things at home.  She could still shower a couple of times a week (when prompted) and dress, but that was about it.  Couldn't fix any meal, couldn't do any task except some cleaning, she liked to vacuum repeatedly and dust (but i had to make sure no cleaners were involved).  About her only other activities were repeatedly feeding the cats (not really normal), shuffling through old papers, and watching television.  And a repetitive cycle of the same questions for me all day long, when she recognized me (which wasn't always).

Battlebuddie

  This is a good question , and it varies by the PWD and the stage. My answer is you will know. It sounds like you like doing things outside . We are big nature lovers and cyclists here so I understand. In Stage 5 things begin to get harder . Before that I think you can do all kinds of things with preparation and scaffolding for the PWD. 

We spent a lot of time walking around a local lake( pretty much every morning) My husband enjoyed it and so did I. But he began to walk slower as we approached Stage 6. I was still fun but I was getting no exercise . As time went on he started wanting to go off the path and stop people who were trying exercise to chat. ( he always insisted he knew them) 

  It finally just became too unsafe and stressful for us both. I would say keep trying to do whatever you can , but when it’s not benefiting your loved one, find other things to do. My husband loved going for car rides and drive throughs in Stage 6 ,until he lost the ability to get in and out of the car. Then it was just sitting in the yard or inside activities.

Hoot619

What used to be normal sure isn't today. All DW can do is feed herself, I try to dress her. But lucky if I can get clean Depends on her. If I have to  get her to take a shower it is a fight to get her in there. I have to wash her and she fights me all the way.

  Getting her dressed , long pants and sweat shirt or long sleeved shirt takes half a day. I try for a while and do something else.   DW    Usually sits in chair with pants half on and shirt in her lap. Now that's normal for me today and it sure ain't fun.  Finally I get it on her or she will.

Normal things gradually go away, I didn't notice it so much at first. Now a days I do everything usually did get a thank you ever so often or a smile.  Last few weeks very seldom. 

When I read these message boards when I have the poor me's I find out it could be a lot worse. Sharing on here helps me  let off steam and also learning how others are doing and how they take care their LO's.  It sure as hell is no picnic!! There is no normal anymore seems each day is a little different. Hoot

Just Bill

For me normal was gone shortly after her diagnosis. She got her diagnosis at the same time her job suggest she retire. On that day she locked her keys in the car and that was the last time she drove. So I had to run my business during the day then drive her all over hell's half acre when I got home. She loved to drive and work and being cooped up in the house drove her crazy so I would take her out for drives just to get her out of the house. I have taken over all her responsibilities one at a time. I am always prepared for a psychotic episode. She has gone from carrying half the weight to me carrying it all. She can be like dealing with a learning disabled toddler to the sweetest most adorable person that I know and love. Yeah, normal is gone.

Joe C.

Wizmo, DW and I had to significantly scale back our activities as the disease progressed but I have always tried to keep her as socially & physically active as possible. We traveled, dined out and went to the beach well into the progression. You just need to figure out what you can and can not do. I placed DW who was probably stage 6C in MC 9 months ago, but I continue to take her out to lunch/diner, for short walks,  to listen to music at free outdoor venues and I’m even hoping to get her to the beach before summer is over.

My advice to you is to find a way to keep yourself physically active after she can no longer participate in these activities. Physical exertion is a great stress reliever and I found stay active in playing Pickleball, going to the gym and running with friends provided some much needed socialization for me as DW declined. You will need to find some caregiving arrangements when you wife can no loner be alone so start making those plans now. You need to care for yourself as well as her!

Ed1937

Wizmo, I'll make it short and sweet. Don't focus on the things you can no longer do. Focus on the things she has retained, and go from there. If she is stage 5, there should be a lot of "normal" things you can still do.

Davegrant

This is a great question and timely for our situation. Its given me a lot to think about. I love rescue mom response. This tells me that I need to get more creative in my problem solving. My DW seems to enjoy me doing everything and she looks for the fault in anything. She does let me know in a pleasant way. But I am already doing almost everything. I have to find things she can do. For example, the other day, I made breakfast,  set out her pills and cut the lawn. DW asked how she could remove the grass that grows between the sidewalk slabs. We have never done that in 54 years but it is really bothering her as she has mentioned it many times. I don't know how to do it. In our climate we have short summers and the winter will solve the problem. I am not able to get down and chip it away and I don't like using chemicals. At 86 years it doesn't seem like she should be on her hands and knees either. I will try to find something else she can do.This example is typical in that what she often wants to do is not always practical. It often seems like a no win situation so I am not sure what I can suggest for her to do.

wizmo

Thanks to all for your comments.  I know there is a new normal every day and struggle to adjust.  I do focus on what we can still do, making the most until we are no longer able.

Annen1014

That is great advice. When my mother was suffering from dementia, she could still recite poetry. Most frequently, it would be the concluding lines of Tennyson's Ullyses; 

Cime my friends, tis not too late to seek a newer world.

....

Though much is taken    much abides

And though we are not now the strength

That in the old days moved earth and heaven

That which we are, we are

 One equal temper of heroic hearts,

Made weak by time and fate  but strong in will

To strive  to seek  to find and not to yield

I really tired of hearing her recite that (plus the lines that I skipped) every time I visited her, which was daily, I am glad that I heard it often enough to memorize it myself  as I now recite it in my mind at least once a day as I am caring for my DH as he progresses through Alz. 

I have also read that there are unlimited things that we can't do and can't have, and if we focus on those, we will always be envious and s and miserable. I try to focus instead on all the things I do have and can do, and to focus on what remains of the man I have been married to for 57 years.