What is it like to live with dementia?

Twostep said:
There is long-term care insurance and you will have to research its availability. Premiums as as to be expected steep. Please let SF know what you find out.
Admitting to a facility when not being able to make decisions?
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I live in Australia and all I've got is Medicare and private insurance. We pay for what we can afford and it looks good enough for me. I have my family around me and I'm pretty sure they will put me in a home if they find the going hard.

If I can, I will check myself in even though my family seems to find aged-care homes "horrible". My wife worries about maltreatment and rude orderlies. Even if she's right, it won't matter to me. I don't need people to be nice to me. I'm happy with whatever. It's not the case for my wife, though, but I'll be there for her (hopefully).
 

Amanda76 said:
Well, it's hard to say about financial support.
In general, Nursing home is not cheap. When my late husband stayed for about one month after Cancer-surgery to recover, it was about the same charge, close to $6,000 per month as seeing housing, meals, some special exercise and etc., it's quite understandable in comparison to the hospital stay. Luckily, both Medicare and BCBS took care of all of costs. But, just one month, not 7 or 8 years' stay. My late husband told staff in Nursing home to get back home not burden financially to me, his wife. Afterwords, he passed away in his own bed
My mother-in-law on the hand, she was regarded being 'no income' just SS as she transferred her house to one of his sons prior to having Cancer. She did not need to pay any money having stayed in the Nursing home. She stayed there for about five to seven months and passed away in Nursing Home at age 85.
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We can't afford $6000 a month. Your MIL's final days are good enough for me. I hope you've got support. You've been an angel to your family.
 
I lived with many pts like that 8 hrs a day in a mental asylum ; sometimes dreary ; sometimes funny but always a dredge really - but families couldn't cope with them and they were kept dry reasonably well fed and a little exercise? and sometimes kept us very amused - there was a funny side to it unfortunately
 
I worked as a CNA and took care of many dementia residents. Even though I knew something about the disease it didn't prepare me for seeing it in my own life as one of my close friends who lives in this building got it. It is sad to watch her get worse. The videos of Teepa Snow have been helping me dealing with her. She knows me, but not her husband of 56 years. Often she gets mad at him and will come to my door. I get her watching bunny or horse videos and listen to what she is trying to say. Sometimes I can figure it out.

Now her husband has had an operation and is recuperating at home but their daughter is staying with them till June. After that he is not sure what will happen so is going to get help.
 
I'm very late to this discussion, but hope you're doing okay, @Boon54; it's been a while since you posted. I found this discussion after a search because my huzz is starting to show forgetfulness, keeps asking me the same things over and over. We both had Covid a few months back and they say it can cause memory loss, I guess the jury's still out on whether permanently or not. Or it might be some other cause.

So after much research online about it, it appears that the next step and the only thing I can do right now is ask him to see a doctor about his memory loss. Apparently there are tests and medications that help some people; others they don't help at all. I couldn't find any advice as to what to do if he refuses to see a doctor, which I'm thinking he will refuse. (He's a very alpha personality and if he doesn't want to do something, he won't.)

I guess at that point all I can do is ask his remaining brother for help, which I hate to do since he's got incurable cancer. He's also 19 years younger than Huzz so I don't know if Huzz would listen to him anyway; they get along okay but Huzz is very alpha and brother-in-law is not, Huzz still thinks of him as "the kid."
 
My mom started repeating herself telling me the same things over and over every time we talked. She also developed a rather nasty temper and hateful mouth.

She would send me home with food claiming it was only 2 days old and dad would look at me and shake his head no and hold up more fingers. I would take it home and toss it and tell her it was delicious. *shrugs*

Stuff she told me my whole life suddenly changed and she would accuse me of not remembering.

I'm forgetful at almost 60 and still working but I realize it's part of the aging process. One of the reasons I left food service is because I was forgetting important things for job. There was just too much to recall.

I would forget ingredients or measure wrong. Things like that.

The job I do now has less to remember so I'm ok.
 
officerripley said:
I'm very late to this discussion, but hope you're doing okay, @Boon54; it's been a while since you posted. I found this discussion after a search because my huzz is starting to show forgetfulness, keeps asking me the same things over and over. We both had Covid a few months back and they say it can cause memory loss, I guess the jury's still out on whether permanently or not. Or it might be some other cause.

So after much research online about it, it appears that the next step and the only thing I can do right now is ask him to see a doctor about his memory loss. Apparently there are tests and medications that help some people; others they don't help at all. I couldn't find any advice as to what to do if he refuses to see a doctor, which I'm thinking he will refuse. (He's a very alpha personality and if he doesn't want to do something, he won't.)

I guess at that point all I can do is ask his remaining brother for help, which I hate to do since he's got incurable cancer. He's also 19 years younger than Huzz so I don't know if Huzz would listen to him anyway; they get along okay but Huzz is very alpha and brother-in-law is not, Huzz still thinks of him as "the kid."
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Boon, the OP hasn't been here since June Officer. I know your husband is very stubborn from your posts over the years, but I sincerely hope he listens to you when you ask him to see a doctor. Dementia is better caught early than after it progresses to the mid or later stages. It's also a tough, heartbreaking, exhausting thing to have to deal with, so I hope you don't find it necessary to involve his brother, who has enough on his plate, I'm sure. Best of luck with this issue.

I found this article that explains when to be concerned about dementia vs simple memory lapses.
https://www.hopkinsmedicine.org/hea...-dementia-5-clues-to-help-tell-the-difference

This site lists the stages of dementia, the timelines for each stage and probably everything else you'd need to know about the disease.
Seven Stages of Dementia | Symptoms, Progression & Durations
 
OneEyedDiva said:
Boon, the OP hasn't been here since June Officer. I know your husband is very stubborn from your posts over the years, but I sincerely hope he listens to you when you ask him to see a doctor. Dementia is better caught early than after it progresses to the mid or later stages. It's also a tough, heartbreaking, exhausting thing to have to deal with, so I hope you don't find it necessary to involve his brother, who has enough on his plate, I'm sure. Best of luck with this issue.

I found this article that explains when to be concerned about dementia vs simple memory lapses.
https://www.hopkinsmedicine.org/hea...-dementia-5-clues-to-help-tell-the-difference

This site lists the stages of dementia, the timelines for each stage and probably everything else you'd need to know about the disease.
Seven Stages of Dementia | Symptoms, Progression & Durations
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Thanks so much, @OneEyedDiva; those sites are extremely helpful! It looks like he's at Stage 3 now. Well, we had a little talk this evening and he's agreed to talk to his PCP about it next time he goes in (next appointment is in May). I tried to get him to go in earlier but he won't "unless it gets worse." I think I'm lucky he's just agreed to talk to his PCP about it.

I wish our health ins. would cover us to see a geriatric md but there are only 4 of those here in town anyway. But maybe his PCP might refer him to one? I hope so.
 
officerripley said:
Thanks so much, @OneEyedDiva; those sites are extremely helpful! It looks like he's at Stage 3 now. Well, we had a little talk this evening and he's agreed to talk to his PCP about it next time he goes in (next appointment is in May). I tried to get him to go in earlier but he won't "unless it gets worse." I think I'm lucky he's just agreed to talk to his PCP about it.

I wish our health ins. would cover us to see a geriatric md but there are only 4 of those here in town anyway. But maybe his PCP might refer him to one? I hope so.
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You're welcome, of course my friend. I'm glad you find the info helpful. Oh thank goodness he agreed to go!! My advice is for you to go in with him, at least for the consultation and post exam part. And have your questions ready. I recognized symptoms of my sister's dementia about two years before it starting really getting bad. When I brought it up to her SO (who didn't live with her), he brushed it off as normal forgetfulness. I didn't speak to her son and daughter about it, but I wish I had. At the time her son lived in the house she owned (had his own apartment), and was always downstairs visiting his mom, so I thought he would have noticed it.

She started doing the same as your husband...asking the same questions over and over. She also repeats things she told me several times during a conversation. Now she's at the stage where she's wandering, sometimes at night, which is dangerous. Her children live about an hour or more away and our niece lives with her now. I wish her children would be more proactive with getting her into a home, though I know it's a tough decision. But now her safety is at risk. ☹️
 
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Aunt Bea said:
Sometimes I think that dementia is actually harder on our loved ones than it is on us.

Sadly, the longer medical science keeps us alive the more likely we are to develop it.
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If the suspicion is there then delay doesn't help.
1st step is a consultation with a neurologist for testing evaluation.

Once tested if suspected next could be blood test & brain MRI.

Depending on the results of those next would be a PET scan to verify one way or the other.

Meanwhile most likely this could be an interim treatment

Cholinesterase Inhibitors (Mild-to-Moderate Alzheimer's)
These boost acetylcholine, a brain chemical for memory.
Donepezil: (Aricept): For all stages.

Then
Disease-Modifying Therapies (Early Alzheimer's)
Lecanemab: (Leqembi): Targets and removes amyloid plaques, potentially slowing decline.

That done at an infusion clinic.

6 months of that treatment another PET scan should be taken to see if Lecanemab: (Leqembi) is having the desired effect.

PET scan can be expensive & so can Lecanemab: (Leqembi) Actual costs depend on what insurance will pay for.

It's not easy to admit testing is needed. But if left untreated the lack of will to find out for sure is cruel for both the person & family members that have to care for someone with full blown Alzheimer's.

Just like planning & letting heirs know what to do & what to expect isn't a happy topic to deal with . This is just as difficult.
 
OneEyedDiva said:
You're welcome, of course my friend. I'm glad you find the info helpful. Oh thank goodness he agreed to go!! My advice is for you to go in with him, at least for the consultation and post exam part. And have your questions ready. I recognized symptoms of my sister's dementia about two years before it starting really getting bad. When I brought it up to her SO (who didn't live with her), he brushed it off as normal forgetfulness. I didn't speak to her son and daughter about it, but I wish I had. At the time her son lived in the house she owned (had his own apartment), and was always downstairs visiting his mom, so I thought he would have noticed it.

She started doing the same as your husband...asking the same questions over and over. She also repeats things she told me several times during a conversation. Now she's at the stage where she's wandering, sometimes at night, which is dangerous. Her children live about an hour or more away and our niece lives with her now. I wish her children would be more proactive with getting her into a home, though I know it's a tough decision. But now her safety is at risk. ☹️
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My grandmother suffered from Alzheimer's. Fortunately my grandfather built a house for my uncle right behind theirs, so when he passed away my uncle and aunt could look after my grandmother. It was a good thing because she would leave the house at 3am in her bedclothes to take a walk "uptown". :(

We stayed with her during this time and because my grandfather had been a philanderer in their younger days, she would prop chairs against all the doors and declare that he wasn't getting in the house after being out all night. She would wake up later in the night and remove them all, saying she was waiting for him. I recall that she played with dolls as well.

She passed away in a nursing home on her birthday and was completely lucid right before she passed.
 
I saw on this morning's news that not only will there soon be a blood test to detect Alzheimer's, there is a trial with antibodies being used to slow down the disease by correcting the proteins in the Cerebrospinal Fluid the fluid, thus delaying the symptoms. Hopefully we will get there sooner rather than later.
 
seadoug said:
I saw on this morning's news that not only will there soon be a blood test to detect Alzheimer's, there is a trial with antibodies being used to slow down the disease by correcting the proteins in the Cerebrospinal Fluid the fluid, thus delaying the symptoms. Hopefully we will get there sooner rather than later.
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There is a blood test that can detect the presence of the plaque that damages the brain function.
Google Search

With our advantage plan there is a process that must be followed.
1. Explain the concern with your PCP. The PCP will refer to a neurologist for testing evaluation.
2. The neurologist will perform a test involving recalling words, drawing, & other skills related to memory.
3. A decision to have further testing is made.
4. A MRI brain scan & the FDA approved blood test that can cost $1,700.00 is a preliminary step not a definitive indication of Alzheimer's.
5. Once if there is a high likely hood of Alzheimer's a PET scan will be ordered.

During this testing a prescription for
Cholinesterase Inhibitors (Mild-to-Moderate Alzheimer's)
These boost acetylcholine, a brain chemical for memory.
------>Donepezil: (Aricept): For all stages. may be prescribed.

If found then this can take place.

Disease-Modifying Therapies (Early Alzheimer's)
Lecanemab: (Leqembi): Targets and removes amyloid plaques, potentially slowing decline.

That done at an infusion clinic.

6 months of that treatment another PET scan should be taken to see if Lecanemab: (Leqembi) is having the desired effect.

Rather than trying to hide from what was obvious to us this is where my wife is in finding out what her/our future might be. We won't know until later in Jan. what to look forward to. Our sons know what is taking place.

Knowing that
Lecanemab: (Leqembi): Targets and removes amyloid plaques,& only potentially slows decline gives some hope.

The hope being that death will come before total loss of memory happens. Because we are proactive it gives us time to plan. Meanwhile if the disease does progress I will be my wife's care giver until I die. After that there is sufficient money to insure her care will take place at a premier facility until she dies. Our sons know what the plan is & what is expected of them.

I can't imagine anyone being so stubborn once suspicion is a concern to them, not wanting find out for sure what to expect.
 
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