How many caregivers are keeping their spouses at home until the nightmare ends?
Comments
-
Abby, my DH is stage 6/7 and I will do everything in my power to keep him home. We’ve managed so far and found solutions as we go. My husband has always been kind and cooperative and depends on me. Abby, please check your private messages when you have time.
0 -
I did keep my husband at home until his death in 2020. He had EOAD. He was 57 when it started and 65 when he passed. I was able to do it because I was nearly 5 years younger than him and physically able to care for him. He was able to do most ADLs with only my supervision the whole time. He was never incontinent until the last 8 days of his life, which was a miracle. He had been on hospice for almost six months when he suffered a massive, life altering seizure and died 8 days later.
He had a small long-term care insurance policy through work which I used to pay for a caregiver to come in a few days a week. That's the only way that I stayed sane. I needed time away on a regular basis. I considered placing him, but that would have bankrupted me, even with Medicaid, so I kept him home.
3 -
My DH passed away last month and I had him at home. He had only been in hospice care for two months and I took him to the hospice respite center a week before Thanksgiving so I could have five nights break. He walked in with his walker and seemed just fine but they think he had a stroke there and had to come home in an ambulance. I had his hospital bed set up in the family room so he could be right there with me. Hospice told me we needed to keep him as comfortable as possible the final few days to a week that he had left. Our cat was by his side the whole time and he passed peacefully six days later. I'm comforted I did everything possible and that he was at home where our friends came to say their goodbyes. It's a decision only you can make. There is no wrong way.
6 -
Many of us likely start out thinking we will keep our spouse at home throughout, as I do. But we all have limitations of different kinds that may make it no longer possible at some point. Give us the strength and emotional balance to know if we reach that point.
5 -
Finished the 8 year journey with DW, she passed away quietly in her sleep, at home, under my care earlier this month. She was 61, had EO FTD. Seemed to have gone through it all; Trust, several mental health and hospital stays, bad reactions to meds, family on her side stealing, 16 months to get SSDI, probate court, (all the crap that goes with that in fees, filing financials) for a conservatorship necessary to represent her in a lawsuit against her sister her sold her property in a foreign country after she learned of her disease. Last 4 years here, needed help with all her ADLs. She was fully ambulatory right up to the end. Walking around all day, sometimes yelling. But there were moments she smiled, sat beside me on the couch and dozed off with her head leaning on my shoulder. In these quiet moments, when the agitation abated, and the fog of dementia would lift, just enough, she look look up at me, while on the couch, and reach her shaking hand out and touch me, quietly murmuring, “I love…love”. Any understanding of me as her husband had long since past away years ago. She was also do this with her caregivers at home. For me, it was her sweet and kind spirit, still reaching out, and for me, I lived for these moments and she was this way right up until I tucked her into bed, waiting quietly until she fell asleep, (as I done so many times these past years). I’ve been told it was a blessing she died quietly this way, suppose it is, the long good bye is over. Yes, it was hell, but for me, I’m still grieving and a strange quietness fills the home now, that’s painful. This was abate I know, I’m planning trips and a future now, doing what I want and whenever I want is completely new and looking forward to that. Looking back, for me, though the disease took everything physically and mentally away from her, I witnessed her spirit, untouched, still coming through, and was still able to find ways to connect with that until the very end. Rough journey but I’m glad I stayed and she’s now at peace.
6 -
Sometimes you have no choice but to place your LO. I imagined I'd keep DH home. Then he started running away. And threatening me. He didn't know who I was or who our son was. It became dangerous. Add in the fact that he was a strong 57, and I still had to work so we had insurance and could make the house payment. I hired full time caregivers for when I was at work - but he threatened them and ran away from them. They all quit. I placed him almost 3 years ago. He now hasn't walked in over 2 years. He needs a Hoyer lift to move him. I could never take care of him on my own. Placement has been the best for both of us.
3 -
God bless you. I’m so sorry. I have no words. You are obviously a wonderful man. ❤️
1 -
Your situation sounds like mine. DH w as diagnosed July 2024. How do you find out about stages? Doctor did not let me know.
0 -
GayleW, It seems most medical professionals aren’t really much help in giving caregivers information on the stage that their LO is in. Doctors often just categorize patients as mild, moderate or severe. But there are many resources here and around the internet. You should start here, on the alz site, it’s under GROUPS, New Caregiver Help:
https://alzconnected.org/discussion/68020/staging-tools#latestI found most helpful the Fisher Scale document as it is more narrative, it is used by my DW’s hospice agency. The Tam Cummings document is often cited here and is more of a succinct list of characteristics, also very helpful. Also describe your DH’s condition in a new thread and many here will help you put him in the most probable stage.
0 -
Abby, I am not on the boards often anymore due to the demands of very late stages for my DH at home. I wanted to urge you to revisit the VA. If your LO is a veteran, at some point a dementia diagnosis and evidence of inability to live alone safely, qualifies them as Catastrophically Disabled. If he could harm himself (wandering, wrong meds, falling in shower, etc.), or someone else (turning on oven and forgetting, metal in microwave, weaponing up due to hallucinations, delusions, etc.) — these all point to a need for you to have help for them since they can't manage ADLs or IADLs alone.
We have made it to Stage 7 (not something to write home about of course), but DH is relatively comfortable, calm, and I am able to care for him at home. This is only due to the VA support providing 40 hrs of caregiver help weekly, and he has been on hospice for over 3 years now with steady, heart-wrenching decline (kicked off once for gaining weight, but put back on fairly quickly due to fainting/falling).
He cannot speak and is down to 100 lbs., so even though I am small, I have no trouble turning, cleaning and changing him. We have had SO many false alarms where I really thought it was his final hours, but he rallies and is still here. So, we wait. I am beginning to get a little anxiety because I really dread any uncontrollable pain or suffering for him which I think could happen. He is just a whisper of a person now. Physically almost skeletal compared to even 6 months-1 year ago. He eats (I puree everything), but his brain and body are no longer processing the nutrition. Yet at least once a day even now, he may blow me a kiss, catch my eye and eke out a little smile, and even occasionally startle me and the aide by mumbling then telling me he loves me, or last week "you look good, girl!". He is 83 and such a good man. I hate this disease. You all take care.
11 -
where can I tell what stage my husband is in?
0 -
bjdtgd, for info on staging look at my previous post just before yours.
0 -
This site has useful information about staging of Alzheimer's. This cannot be applied to other types of dementia. They progress differently.
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
0 -
I only heard of stages here. DH was classified "moderate". There is a tool on here that you can take advantage look at.
1 -
I am planning to keep my husband at home. Too many horror stories about nursing homes in Florida and I do not think he would survive very long away from home. He is very clingy and wants me in the room with him all the time. He is a 100% disabled veteran; the VA has given him a Home Health Aide (HHA) 6 hours a week and respite hours for me that I use to have the HHA 3 days a week for 4 hours each day. I have requested an increase in HHA hours so will see how that turns out. It definitely helps. I am 80 and my husband is 84. Fortunately, I am a fairly young and healthy 80. I think he is in one of the later stages of the disease. He does not wander; he is not violent. He spends a lot of time in bed. Occasionally, he gets upset about something I do and cries. For example, today I trimmed his nails and when I finished, I was moving a stool I used next to sit next to his chair and dropped it. He thought I threw it and he got mad at me and said I was mean and cried and pouted for a while. I know he will forget all about this, but it is upsetting to me because I am trying hard to control my emotions with him. Anyway, thanks for being here.
2 -
I hope to be able to, but have seen how it went with both of my DW's parents as they entered stage 6 and 7. From those experiences, I know even my strongest desire to keep her home will not be able to battle some of the unmanageable behaviors that can arrive in these stages. I am already grieving the idea of even knowing I may have to place my DW for her own safety.
2 -
All I can say is, "DITTO." My DH is 83 and I'm 82. He's 5'11" and I'm 5'2." He has severe Alzheimer's disease and Lewy Body disease. I'd say he's at stage 6. The sheer exhaustion of being ON 365/24/7, multitasking constantly, handling all the household duties, 3-4 loads of laundry every day (and I do have help), the loneliness and isolation are taking their toll. I'm about to transition him to memory care and I fully believe it will be better for him—socially, cognitively, and physically. I wish it were otherwise but wishing won't change it.
6 -
I am new on here. How do I tell what number or stage he is in?
0 -
Click on the link here below:
https://alzconnected.org/home/leaving?allowTrusted=1&target=https%3A%2F%2Fwww.alzinfo.org%2Funderstand-alzheimers%2Fclinical-stages-of-alzheimers%2F
0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 496 Living With Alzheimer's or Dementia
- 248 I Am Living With Alzheimer's or Other Dementia
- 248 I Am Living With Younger Onset Alzheimer's
- 14.8K Supporting Someone Living with Dementia
- 5.3K I Am a Caregiver (General Topics)
- 7.1K Caring For a Spouse or Partner
- 2.1K Caring for a Parent
- 184 Caring Long Distance
- 114 Supporting Those Who Have Lost Someone
- 14 Discusiones en Español
- 5 Vivir con Alzheimer u Otra Demencia
- 4 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 9 Prestación de Cuidado
- 2 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help