So many posts remind me. . .

ghphotog · September 30

I see many posts and I think to myself we were there in the exact place 3 maybe four years ago and we are still not done. I feel sorry for those with years still left in trenches. My heart goes out to you because I was there as well and still am there. We are on the backside now but doesn't mean we don't have a long way to go still.

At this stage it could happen tomorrow or next year, no way to tell.

.

SDianeL · September 30

My heart aches for everyone who is caring for a LO with this terrifying & heartbreaking disease. My husband Lonny’s suffering ended August 12. 🙏

Aarron · October 1

I know how you feel. My DH is going on year 7 and is 66 years old. I’m tired of living like this as our lives were turned upside down and I miss the life we once had. I’m fortunate he is a gentle soul and is easy to care for. I do everything for him except feed him. He is in late stage 6 and has really digressed this year such as communication and major confusion. Hang in there as we all are doing our best.

fmb · October 1

@ghphotog, Like you and @SDianeL, I read the posts from those not as far along in the journey, and I pray for them to find the strength to endure what is yet to come. We, too, are nearing the end of our journey with no way of knowing whether it will be a few weeks or if we still have months to go. DH took a sudden downturn three weeks ago, but is still eating. He seems to realize that he is dying. Per DH's request, a clergyman came to his facility today, and DH was baptized into our faith. The desire to do this came about only in the past couple of weeks. He is preparing to leave me, but God only knows when.

M1 · October 1

I’m in the same boat, sometimes the end seems near and sometimes it seems like this could go on forever. We’re in the eleventh year since symptoms showed up.

Kat63 · October 1

Right there also, reading posts and know we are closer to the end but still feel it could go another year or so. Have hospice on board and DH is starting to have issues with swallowing. Has had a cough right after eating/drinking for about three weeks and nurse suggested thickening drinks. I don’t know I want to do that quite yet but may need to before too long. This coming January will mark ten years since I noticed symptoms and knew something wasn’t right.

SPin-need · October 1

reading these posts gives me both comfort and fear. I am already struggling in this middle stage and have to fight to keep on going, knowing you have made it helps in the moment but when I think of what is to come, I want to run. I want to stay in the moment but also know I need to plan ahead. Expletives are shooting from my brain. There is no answer

Buggytoo · October 1

I am saddened at how very long it takes for people to die from this illness. It seems like it doesn't happen until the last dollar is extracted from the family's pocket and the emotional and physical health of the surviving loved one is compromised beyond recognition. Truly, this is inhumane for all of us.

ghphotog · October 1

https://alzconnected.org/discussion/comment/224372#Comment_224372

Spin-need, hang in there. Time seems to stand still and drag on and on but as caregivers we live day to day, one day at a time, one moment at a time and when you come up for air you realize just how far you've come. If you try to see the "long" picture you'll drive yourself crazy. You're tired, exhausted but you carry on because there are no other choices. You'll make it. I don't know how much longer we have to go in our journey but we are closer to the end than the beginning now. My DW is in MC for the last 6 months or so. Yes it's easier on me as a caregiver but it's hard in other ways as well.
I might do a post on 10 things I've learned about MC.

midge333 · October 1

We are 8 years from diagnosis and 12 years since the onset of symptoms. It seems like it will never end. It is so cruel.

ghphotog · October 1

https://alzconnected.org/discussion/comment/224391#Comment_224391

It's very cruel, unfair and crushing to watch this happening to them and ourselves as their caregivers providing daily life support as we provide less and less for ourselves.
It's not fair at all.

RayeMc · October 1

https://alzconnected.org/discussion/comment/224372#Comment_224372

Exactly! I feel like the hamster on the wheel, moving but not getting anywhere. I've much to be thankful for even though we are nearing the 11th year from when I first noticed my DH's symptoms. He has recently without fanfare ceased driving, is generally easy going and even tempered, but we also have no life. And as you said, "there is no answer."

Beachfan · October 1

This post resonated with me as I am 17 months into “stage 8”. DH passed in April, 2023, just shy of the 13 year mark since Dx, although there were subtle signs prior to Dx. I check the forums regularly, but rarely comment since I no longer have current advice for those in the trenches. I should probably avoid checking altogether; like ghphotog, my heart aches to read of the journeys just beginning or those mired in the depths of Alz.
I was fortunate. DH was “easy” at home; I then had the luxury of being able to afford placement (17 months in a MCF), and his passing was quick and peaceful over just 4 days time. Please know, all of you, that I linger on this site, hoping and praying for fortitude and eventual peace for each of you. And, yes, there is life after Alzheimer’s; sadder, slower, but hopeful. ❤️ Bless us all.

Quilting brings calm · October 2

Reading all the posts from the new people and the rest of us makes me sad. I’ve been on this forum for four years and the line of people newly diagnosed never ends. Meanwhile the front of the line just edges ever so slowly to the finish. It’s as if the line is constantly growing in size. We help each other, but there’s no cure. There not even a good organized system of help, just each of us recreating the wheel. Because we ( this country) have been taught to think we should be able to handle what comes on our own.

wenhen5 · October 2

Brand new today to this forum. Thank you for these posts. Already feel a little less isolated and alone.

ThisLife · October 2

Almost six months into Stage 8. We were 15 yrs. from my noticing and 12 yrs. from diagnosis. My son was sure his dad had 2-3 more years. DH was in MC six mos. physically healthy, continent, fed himself, angry, combative and could speak his mind. The end lasted seven weeks. It was stunning how rapidly we got to the end. I remember standing at his bedside after he passed thinking So, THIS is how it ends? Really?

I too read the posts. The amount of new people coming to the forum for help! And the ongoing journeys in all stages. The cruelty of the disease for loved ones and caregivers! My heart breaks.

SDianeL · October 3

wanted to comment a bit more. The average length from diagnosis is 8-12 years, however it can be much shorter or longer. My husband Lonny was diagnosed in 2021 but had symptoms for at least 3 years prior. I didn’t notice until COVID and we were alone, staying put and isolated. In January I had to immediately find memory care due to my cancer diagnosis. It broke my heart. He did well until a few months ago. He went from a cane, to wheelchair to bedridden & incontinent in just a few months. He no longer communicated much. He started getting choked and then had difficulty swallowing. He went on soft diet & then puréed food in just a few weeks. He stopped being able to feed himself. August 11 he aspirated, developed pneumonia and passed the next afternoon. I am sharing his story so you can prepare since it can happen quickly. I knew it could happen because of the support from this group but I wasn’t really prepared for the heart wrenching decisions and the heartbreaking loss. Praying for you daily. ❤️🙏

4MY❤️ · October 3

We are seven years into this journey and I don’t know how I will find the strength until the end. We could have a long way to go still.

ghphotog · October 3

https://alzconnected.org/discussion/comment/224547#Comment_224547

Thank you! My DW is now moving to a Gerry chair. Has lost 5 lb in just one month and is eating less. Starting to develop swallowing trouble. Sometimes like yesterday she was alert but other days very out of it. I look at her and think she will be around quite a bit longer but then I add up the changes in the last few months and think she could go very fast.

ghphotog · October 3

4Amy, I know it's very difficult and exhausting and seems it will be this way forever but it won't.

fmb · October 3

https://alzconnected.org/discussion/comment/224590#Comment_224590

Sounds like my DH. He's been in a Broda chair for months. Is down to skin and bones and retained fluid; his arms are thinner than mine, and I am a thin woman. His swallowing trouble is getting worse, and he is pocketing puree in his cheeks because his tongue is not working right. Today he was relatively alert, but he slept nearly all of yesterday. And I learned today that because he is 'stable', his hospice nurse will now see him only once a week and the bath aide will wash him only twice a week. The hospice agency doesn't have the staff to cover their caseload, and there are many who are in greater need.

To add to comments above, DH was diagnosed with moderately severe ALZ last summer after having a small stroke. The diagnosis came as a great shock to me, but looking back I can see that he was losing executive function abilities at least 10 years ago.

Denise1847 · October 5

https://alzconnected.org/discussion/comment/224387#Comment_224387

I couldn't have said it better - this is the worst disease because of its duration, it taking little pieces of a person away at a time and robbing you of your finances.

SDianeL · October 5

https://alzconnected.org/discussion/comment/224590#Comment_224590

so sorry. Once they have trouble swallowing they go downhill quickly. Hugs.

So many posts remind me. . .

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