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Scared of the clarity
My bf who is 46yo (eoa/ftd) stage 7, on hospice. No end of life care (morphine, haloperidol, the usual stuff). The last few weeks we have noticed a big decline. He stopped walking a little over 2 weeks ago, food intake has been baby food, ensure and pureed food as well. Well today his best friend came, who was just here…
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Atrophy of hands
My DH is in the middle stages of Alzheimer’s and has been developing atrophy of the hands making it hard to button shirts, open jars or do a lot of things requiring finger dexterity. He is going to PT but is told each visit that he needs to do a set of exercises to 30 minutes to 1 hour a day. I have to keep reminding him…
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keep or cancel phone?
Hello All-I have a question that has been on my mind for quite some time. My husband, who has dementia and is living in a boarding care facility has not used or needed his cellphone for many months now. I kept it as a just in case for the authentication code thingy but now everything is tied to my cellphone instead. I pay…
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Alzheimers drug horror story from the NYT
https://www.nytimes.com/2024/10/23/health/alzheimers-drug-brain-bleeding.html?ogrp=ctr&unlocked_article_code=1.UU4._7lR.3WFk8efLcVB9&smid=url-share I hope this link works but this is a gift article which I can reprint its all here in a number of sections It is the worst ethical violation I have seen in my entire career…
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Bible Verse to Lift You Up 11/15/2025
GOD IS MY SHIELD Psalm 3:3-4a But you, Lord, are a shield around me, my glory, the One who lifts my head high. Proverbs 30:5 Every word of God is flawless; he is a shield to those who take refuge in him. THINK ABOUT THIS: When storms slam head-on into our lives, let’s keep praying and thanking the Lord anyway. We find our…
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APOE Test not covered by Medicare?
Our neurologist ordered an APOE blood test prior to prescribing Kisunla. When we went for the test we were told it would not be covered by Medicare or Tricare and would cost $700. Is this what others have experienced? And is the APOE test actually required? We've done the PET scan. Of course, we'll find the money if the…
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Not eating and losing weight
My DH appetite is bad. He has lost so much weight. Yes I've tried the protein shakes they are a hit and miss. I keep snakes around. If I can get him to eat once a day I'm lucky. I've tried just making the food and giving it to him, sometimes he'll take maybe 2 bites and throw the rest away. I've asked him what he wants,if…
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What the …?
so I’m sitting here making dinner for my DH with VD after taking him to the movies-aka date😁 that he said it was so good to when we got home (5 minutes) to it was ok . I know he didn’t remember it but his first thought was positive! The Horsemen BTW. Now I’m making dinner and wondering why ? He’s been in the kitchen 3…
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My plan of action failed
In conjunction with a wonderful Care Consultant, #1 on my action plan is safety concerns. If my husband continued hitting himself or struck me, I was to call 911 and ask for him to be taken to the hospital for a psych eval. After a comprehensive evaluation, including an MRI to possibly identify the type of dementia, I…
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Hospice and another fall
Well, I did it. I signed DH up with hospice. Early this morning, around 2:00 am, I woke up to go to the bathroom and found DH at the end of the bed, sitting on the floor. That makes his 10th fall this year. It's impossible for me to get him up. So per the hospice instructions, I called them first to report the fall. Then I…
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Just starting infusions
My husband has early stage Alz and is seeing a Dr. to hopefully begin the Kisunla™ (donanemab-azbt) infusions. Can anyone share their experiences with this treatment? side effects - anything we should know about the experience - etc.
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Walk With Bill_2001: 10 Years as a Caregiver
Hi Friends, Three years ago, I posted the article entitled “The Cavalry Is Not Coming,” and I have been humbled by the fact that many of you have found it helpful. Thank you all for your kind words. If you have not stumbled upon it, search for it in this forum and it should come up. I wrote that post to share an epiphany…
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Kisunla
Good morning to all. I hope you’re finding peace somewhere along this journey that we’re all on together. I don’t post very often, but a friend sent me an article about a new monthly infusion called Kisunla. I’m wondering if anybody out there is aware of this or has had any experience with it. This is advertised as yet…
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Home health care
I am 70, in reasonably good health, with some managed issues. DW is 67 in moderate stages. She has frequent urinary incontinence and needs assistance with dressing and bathing. I cook breakfast every day. We have an adult daughter nearby who really helps out a lot, frequently bringing meal preps and assisting 2-3 days per…
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How many caregivers are keeping their spouses at home until the nightmare ends?
I’m absolutely determined to see my DH through this nightmare. I am determined to keep him home until the end. Are there others out there that are doing this and have you managed to keep your sanity through it? My husband is in stage late 4/early 5. He’s always been extremely calm, kind, gentle, helpful, loving. I just…
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Our Theme Song?
I ran across this song yesterday and it got me all weepy. Love it though. For everyone on this journey; you’re not alone. https://youtu.be/E5488fUMLXs?si=ddyuj-Xm6_Housq5
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Need Advice on Preventing Falls
My DH, who is in the later stages of Alzheimer's and lives in MC, is having two different issues with falling on the floor. The first issue is that he is becoming more and more unstable when he walks and has fallen a few times and split open his forehead. Now I'm told that he is hallucinating and reaching down to the floor…
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Peeing all over himself
My DH with mixed dementia has started having accidents in the bathroom. Some of the urine goes into the toilet the rest ends up on the toilet, floor. He wets his pats and urine runs down his leg into his shoes. His shoes are washable but they need hours to dry. I bought him sone washable slippers so that I can get through…
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Other expiriences
My DH is blaming his Alzheimer’s on his CPAP. He found a water bottle he uses and he thinks this is a miracle cure. He talks about from the time he gets up until he goes to bed. It gets tiring most days. He also thinks the doctors know this but they just want more patients and people who use CPAPs are all going to get…
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SAD/Angry/SAD/Guilt/SAD
I have read this situation here but have never experienced it myself until recently: My DH is stage 5 VD and some days cannot dress himself. He has a son, daughter and stepdaughter from a previous marriage. The stepdaughter has caused a big riff in the family. She seems to have turned the son and daughter somewhat against…
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A Fall
Falling has become more of a thing for my poor DW. This last one was my fault…trying to get pants pulled up and down she went. Now at the emergency room as her wrist looked a mess. Damnit.
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Denial
My dh was diagnosed last year. He is in denial that he has Alzheimer’s or I should say he thinks he is getting better. If you try to talk to him about it he just gets angry and I am a b. Not a nice word. Has anyone had this problem.
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new to group but not to dementia
Hi All, I am not sure what I can do to help my husband when he yells at me so much. I can't write DH because he has been verbally abusive for a very long time. He also has GAD,OCD and depression. That is along with dementia. His mother had dementia as well so he watched what happened to her. He has been on Aricept for…
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Input requested for oxygen use on very late stage dementia
My DW has been in Stage 7f for about a year. She is minimally conscious and I am told that her cognition at this point consists mainly of core brain stem functions, her only obvious action is a primitive feeding response. She makes no other movements or responses to any outside activity. She has been starting to exhibit…
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Big bathtime mistake and confusion with geting dressed
DH hadn't showered in two weeks and I was trying a different approach on Saturday. Rather than telling him he needed to take a shower which is always met with resistance, I asked him if he would rather take a bath or a shower. Naturally, he chose a bath. It almost turned out to be a disaster! He fell to a sitting position…
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Exhausted and Bewildered
It is 522 AM and I have been up since 1AM trying to deal with my DW. She woke up claiming some men were raping her. I tried to calm her and tell her I was here with her. She when accused me of watching this all happen and that I did mothing. I tried denying all this , tried to assure her this was not happening and that I…
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The pain of living with ALZ
Tonight was the hardest night so far. Which makes it the hardest day. Of the hardest week. Of the hardest month. Of the hardest year. So far. He forgot me for the first time. He promised he wouldn't, but I knew he couldn't possibly keep that promise. It just came so much faster than I was prepared for.
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Update on DW
I haven't been around in a while but thought I'd post and update on how my DW is doing. She has been in MC and hospice for over a year now and on comfort meds. MC has been both good and bad, usually short staffed. They take reasonably good care of her. My DW has been bed or gerri chair bound for a year, stage 7, and has…
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Take your own care seriously…
I met a woman yesterday that was pondering placement of her husband in MC. She was recently diagnosed with breast cancer and is now undergoing chemo - surgeries including a hysterectomy will be following. She told me that for 8 years while she took care of her husband, she neglected her own health, not getting mammograms…
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Angry
My DH has been diagnosed with Vascular Dementia almost a year ago. Recently he’s become easily agitated and angered. I spoke to his neurologist about it and he denied all of it. I was hoping to change his antidepressants. She said she thought it wasn’t necessary. She thought pain might be the cause since he has chronic…