New here
My husband was diagnosed around six years ago. I would guess stage 5 and some stage 6, He has had difficulty speaking his thoughts for quite awhile but understands what I am saying as long as I am clear and concise. It is so hard to explain your alzheimer spouse to others they would have to live and deal with them 24/7 to get a clue. I have no outside help and so far managing. He doesn't see anyone but a family doctor. I don't see the point in the testing. Maybe I am wrong there. So very interested in reading all the discussions
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I am in the same place you are. My DH only sees his local Gp. In our remote area, that’s all we have available. It’s just me and him and he is more stage 4 straddling 5. We do ok overall. He was tested 6 years ago, maybe 7. I lose track. No definitive diagnosis at the time. He never wanted to go for further testing and I said ok. It is what it is. The people here help me more than anything else providing knowledge and support.
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My DH was diagnosed 6 years ago. I took him to a neurologist to rule out other things like a tumor etc… I suspected Alzheimer’s but was praying it was something else as he was only 59. He's definitely in stage 6 now and has declined since having Covid this summer. He sees his neurologist once a year. He has partnered me up with an organization called”rippl”. They are paid through Medicare and I don’t pay a thing. They help me with finding caregiving or anything I need also counseling for what I’m going through. They also send doctor a quarterly report of how DH is doing. This program has helped me a lot.
I totally understand how you feel about people understanding living with someone who has Alzheimer’s. I feel they don’t understand how much we go through every single day. Take care and know your not alone.2 -
Welcome. Glad you’re here but sorry for the reason. I agree with you. The only way early testing might help is for getting into drug trials. You may need a Geriatric Psychiatrist if your LO starts having hallucinations, sleep issues or becomes agitated or aggressive and has to be put on medications to control it. They are best for managing those meds. This is the place for info and support.
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Welcome also. We never did formal testing and never saw a neurologist, were blessed with a very capable internist.
If you look to the right under quick links and groups, there is one for new members with a lot of useful and frequently cited information. Might be helpful.
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I looked up ripl. Not available in the state of New York. Maybe a new program.?
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Luckily so far not being aggressive. He gets frustrated sometime but so far I can calm him down. Hopefully stays that way
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We moved to be closer to our daughter if I need more help . My hope is to keep him home for the rest of his life, will take it one day a time
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yes it’s very new
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Welcome to the forum Sherry. You are so correct about the caregiving - I can’t begin to explain the big and small things that we deal with every hour of every day, except to people in this forum!
I had a similar experience as trottingalong with my DH not wanting further testing (after preliminary MMSI testing resulted in him losing his license). No definitive diagnosis but suspect Alzheimer’s. I don’t see much point in additional testing unless there is some need for it by some agency at some point in the future. I hope PCP will be able to prescribe more meds later in the progression (he’s only on memantine now) because getting him to another doctor might be a challenge.0 -
Hi S&W, your situation in terms is isolation is similar to mine and DW's. Driving to appointments is a long-gone option for us, hooked up quarterly zoom meetings through our PACE social worker with her Geri psych and some in-home day care to help me out. For me, was best to be prepared for sudden changes such as agitation and get some help in my home. Though you may feel your managing now and your DH may be calm, it may not last and burnout is a reality with all of us. One thing we all know with this disease is that change is a constant thing and if you can, consider getting some help, including in-home visits to better assist you living with this disease as well. Wishing you the very best and you are definitely not alone.
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Oh I feel burned out at least a few times a day. My husband the last few years listens to music with earphones on. He used to be able to operate the tablet and start the music. Not so much anymore. He had wireless for awhile but kept turning the Bluetooth off now he has the wired ones. He stands up forgetting to take them off dropping to floor numerous times a day. I have to adjust them back on start the music again all day long, He needs assistance dressing an undressing. Hard ro get shirts on him. It's one crazy life now. He eats like a child now sometimes using hands instead of utensils. Conversation with him are completely gone, just goofy talk to make him laugh. The worst of it I am starting to forget who he was. It's a new man in my life now. I went on and on here but felt good to say to others who understand . My kids really don't want to hear it they are in there own feelings
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> @Aarron said:
> My DH was diagnosed 6 years ago. I took him to a neurologist to rule out other things like a tumor etc… I suspected Alzheimer’s but was praying it was something else as he was only 59. He's definitely in stage 6 now and has declined since having Covid this summer. He sees his neurologist once a year. He has partnered me up with an organization called”rippl”. They are paid through Medicare and I don’t pay a thing. They help me with finding caregiving or anything I need also counseling for what I’m going through. They also send doctor a quarterly report of how DH is doing. This program has helped me a lot.
> I totally understand how you feel about people understanding living with someone who has Alzheimer’s. I feel they don’t understand how much we go through every single day. Take care and know your not alone.0 -
Hello, my husband 57 was diagnosed with early on set alzheimer's in February stage 5 . Thank you for sharing the information about Rippl, we have to wait for 2 years before he can get Medicare but its good to know we can use that organization to get help finding caregiving.0
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@sherryandwilliam look up paratonia (I think). It affects PWD ability to move arms. I just recently saw a Careblazer YouTube video about it. My MILwAD had difficulty moving her arms to get shirts on in the last few months of her life so I cut her shirts and gowns up the back, finished the edges, added ties (like a hospital gown) and I was able to just slip them on from the front when she was no longer able to do much to assist in her dressing. She usually wore a sweater or robe that was also easy to just slide on one arm, then the other arm without much arm motion. That way she still looked "dressed" to maintain her dignity (she wasnt bed bound until the last week of her life ) without the major struggle and feeling like i was hurting her. (Showering and washing were a big no-go though... )
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Thanks will do. He still wears shirts and jeans so hoping it is manageable for awhile. Have been thinking about the next step in clothing. He goes to stores etc with me . Even with the cooler weather coming and having to get coats on him is tedious
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they make clothing for dementia patients that open in the back and are easy to put on.
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Welcome — my wife has been travelling down the dementia road for over 4 years now. After being diagnosed, we had an MRI done to rule out tumors etc. Since then it has been a slow decline. Her primary care provider said she could refer us to a neurologist but agrees that might just result in some new medications for symptoms. Since my wife does not acknowledge the dementia, even suggesting another doctor might be a trigger. Anyway best of luck and try to persevere.
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Here are a couple of tips for dressing: if it's a soft t-shirt, put it on his arms first, then stretch it up over his head and back. For a jacket it's the same idea: arms first, but lift the jacket up from hands to shoulders from the back. The t-shirt one is pretty easy even if he doesn't understand, but the jacket needs him to be fairly cooperative or at least keep still. :-)
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I will give that a try. The new things we have to conquer every day! Thanks
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That may have to be the next step. Hopefully a way off
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My husband was a Levis and cowboy boots kind of guy. Now I slip him into a pair of my black, boot leg yoga pants - easy on/easy off, comfortable and great ease of movement.
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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
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