What can I expect with progression?

KathyF1

I am new to this forum, my DH has Alzheimer’s and I’m trying to plan for our future. I’m not sure what stage he is in, but he has problems coming up with words, often rambles when he talks, asks lots of questions and constantly “shadows” me. He gets confused about what clothing to wear. If I don’t help him he’ll put on a dress shirt to go to bed. He used toothpaste the other day to treat a cut on his finger. He never knows the difference between the TV remote and his cell phone.  He is forgetting details about his past now too as well as of course the short term memory. He’s at times delusional, he thinks he started the January 6th riots. (We weren’t there) He thinks he’s “fine” and that is a blessing, I want most of all for him to be happy. 

One decision I have to make is whether or not to sell our large farm in the country and move somewhere that has good resources for in home help and support. We have a small home in Florida too. Moving there would be a huge undertaking due to having 4 horses and 4 dogs.  No room for them there. I posted this question a week or so ago and did get some wise advise, thank you!  Still no decision there though. My question now is- does anyone have a feel for how soon he will be declining to a point that I will have to have help? I assume incontinence is inevitable?  I find myself just “ taking a day at a time” but I think this could also be translated as burying my head in the sand. I feel a little like a deer in the headlights. His children are not available to help; it’s just me. 

If any of you can shed some light on how things will look in 6 months or a year I’d appreciate your input! Thank you!

Lynne D

Hi KathyF1,

I don’t think anyone can shed light on what the next six months will bring. It all depends on the PWD and their environment, in my opinion.

My HWD seems in a similar stage as yours. We were told he has mixed dementia, vascular and Alzheimer’s. Vascular progresses in a “step-wise” manner, meaning a mini-stroke can steal function in an instant, without any discernible progression.

I don’t know how your husband reacts to change, but my HWD is content in our rural, familiar home.

I wish you the best. Keep us posted!

John1965

This is my go-to site for progression. 

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

We’re at seven years since diagnosis and just entering stage 6(d).  My new catchphrase is “you can’t go around it; you have to go through it.”  

I made the most of what I could during the early stages. Covid robbed us of some travel opportunities. As much as I love DW, neither of us is happy now. So, there’s a macabre wish for a quicker progression so that I have some chance after … FWIW, we’re dealing with early onset. We’re both 56.

Crushed

I'm at year 12 

My advice is to get your financial house totally in order.     

We are  currently paying $150,000 a year  for DW's care

The  only real  alternative for most people is medicaid

So you need to be doing medicaid planning NOW

Get advice .  Pick a place to live that has the most support

Jeff86

KathyF1, your inquiry is totally understandable but there’s no answer to it, as every PWD progresses at his or her own rate.  Fwiw, my DW’s dx was five years ago, and today she is at stage 6d.  

What I can say is most people seek help later than they should, not sooner.

In case others haven’t mentioned, the most imperative time-sensitive step for you to take if you haven’t already is to see a certified elder care attorney and revise and update your and your DH’s estate planning documents—wills, durable powers of attorney, health care proxies, trusts, etc.—while your DH is hopefully still competent to do so.

This is a tough journey but we are all here to support one another.  

Crushed

Just to follow up, caring for a dementia patient in mid stage is a 24/7/365 job and it can go on for years.   Unless your dogs and horses are good cooks or can do laundry you may find it difficult to find time to care for them.  From 2012 I literally could not let DW out of my sight unless i had someone to sit with her.  She came to every class and every meeting. We got out hair cut together, shopped together, took showers together etc.   Life revolved around DW's needs and desires. The she got psychotic and it got worse.  

I finally placed her in memory care in 2017  Whole different set of problems

All dementia patients have different timetables. 

ButterflyWings

Hi Kathy - welcome. Sorry you have to be here, but it is the best resource and truly caring experienced fellow travelers. I just typed a post and it disappeared, so I will simply leave this alternate link here.

The other one is good but mentions denial in stage 4, which surprises me as many of us have learned about anosognosia -- an actual condition that many PWD's have, which prevents them from realizing their impairment. Not denial at all. And it makes it tougher to get their cooperation even in earlier stages, because it feels like you're gaslighting them if they can't discern that anything is wrong. My DH, has anosognosia and it is a blessing in some ways since he is not despondent over a terminal diagnosis of AD. But it is like Crushed said, line of sight supervision 24/7/365 for years. And still lots of mishaps. Some of them quite expensive and even physically dangerous. 

You are wise to do as much planning and simplifying as possible. I was shocked to learn that 1/3 of caregivers do not survive their LOs disease, so we encourage lots of help and self-care for the caregiver.

We are just over 3 years since dx, and stage 6d. Lots of unrecognized signs before we realized something was seriously wrong and then it was a year of tests and searching before we figured it out. I agree with all that the members have said. The saying is, "when you've met one PWD, you've met one PWD". Your path will be unique, and some of the cautions will never materialize but I'd rather have a heads up as to what might occur than to be blindsided like we were when first dropped into the middle of this nightmare. Keep reading and posting. It helps tons. https://tamcummings.com/stages-of-dementia/

Ed1937

Hi Kathy. Welcome to the forum. Sorry you have reason to be here. I agree that nobody can tell you how long it will take things to progress to the point where you'll need help. 

And to your question about incontinence, some people do not have that problem until soon before death. On the other hand, it's been less than 4 years since my wife's diagnosis, and she is double incontinent. Don't worry about what might happen. That just makes it harder for you. Take it a day at a time, like you are doing.

Here is another good link for you. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

Midwest Gal

Kathy this is my first post but I wanted to add that I am in a similar situation.  We have a farm with horses, goats, ponies, cats, and dogs.  My DH is probably in the early stage 6 our animals have served as good therapy since we are home more now and not traveling as much.  Just doing the chores seems to give us both balance.  I have to supervise as the cats did not care for him giving them horse feed but we seem to do fine so far.  We have been partners with all this for so many years that I can now take the lead.  My DH had been quite the MacGyver type by building our home with his own hands, baling our hay and doing all that needed done.  Now I pick and choose what I can do (with the help of YouTube videos) and what we need to hire.  But it's definitely worth hanging on for now.  I don't want to lose my identity if I have to be the strong one.  The note on my frig says "when things change and seem harder, change yourself to be stronger.". Good Luck.

Rescue mom

They all lose different abilities at different times. The unpredictability is a big part of what makes this disease so hard.

My DH with Alzheimer’s has lost more abilities over 3-4 years than I could list here. His *first, early* loss was any sense of location/direction,  or recognizing where he was, what building was what, etc. He could mostly do his IADLs and ADLs , but did not know where he was or what was around him. Now, all ADLs and IADLs are gone. But he can still toilet correctly.

 I’m told that it’s unusual for someone who’s lost so much else, to not be incontinent. (Hope I didn’t jinx it). He doesn’t know or do much otherwise, at all. It’s just all so unpredictable.

Anyway….I’m sorry. We all wish we could be more help.

KathyF1

Thank you all so much for taking the time to answer my post. This is going to be a valuable source of support, I can tell. I had an appointment today with an attorney to review our wills, etc. I do want to know if we’re “missing” anything.   Next will be an appointment with a financial advisor. Yes, the farm has so many benefits. Taking care of the horses and dogs is his passion now. And always will be mine. The question is whether or not I can get good ( really good) in home care here.