Early onset dementia

[Shaun @ Tru6]

About 6 months ago my mom's oncologist, and his nurse called me saying that she had, from their experience, early onset dementia, after her examination that day. The nurse and I talked for 20 minutes about her experience with her own mom. I had seen signs after my mom's husband passed away 2 years ago but she went back to her old self and had been fine since. I tried to get my mom to see someonemonths ago but she wouldn't go and, again, talking with her every day, seeing her once/twice a month she turned the tide and was fine again.

That lasted until recently. The last few weeks it became ferocious, a term the nurse above used to describe her own mom's development. Christmas was normal and very pleasant but leading up to was starting to worry me. After Christmas, something happened and the last week has been really bad. Of course she won't go see anyone.

Her mom had Alzheimers' but she was as gentle as a lamb her last few years of life. Like the nurse whose mom was the sweetest, nicest, most giving person imaginable, so is my mom, both have had severe personality changes.

Has anyone here dealt with this successfully? I must admit as the only one in my family taking care of my mom, it's completely overwhelming.

[wdfifteen]

I helped my dad navigate 10 years of dementia, from age 76 to 86. You just do your best and take one day at a time, trying not to burst into tears in front of your loved one.

[Roswell]

I was the care giver for my mother for the last 5 years of her life. She suffered from Alzheimer's and dementia. She went through severe personality changes and mood swings, sun downing, it was very overwhelming.

I can not overstate how important it is that you find a geriatric psychiatrist for your mother. This will truly help your mother and save you.

Has she signed a medical Power of Attorney appointing you the POA? If not, you need to get one signed ASAP. You have a rough road ahead, one that will require you to make hard decisions on your mother's care. Having the medical POA will make it so much easier.

May God be with you and your mother. Please reach out if I can help in any way.

[rfuerst911sc]

I would recommend some in home care , a health professional that can come in 2-3 times a week just to check on her . That takes some stress off you and more importantly a trained professional that can monitor the progression of the disease . Obviously her regular doctor stays in the loop .

Unfortunately if she lives long enough and the disease progresses you may have to consider 24 hour care , either in home or at a facility . As a working man it is very tough for you to provide around the clock care . We are currently in the same situation with my 93 year old MIL . She is in a very nice assisted living facility that also has memory care .

Everything I described above takes $$$ . Does she have good insurance ? I assume SS income anything else ? You might want to ask at a local assisted living facility what types of financial assistance programs are available for the elderly . Ask friends/neighbors if they are going through similar and what are they doing to cope/manage . I wish you luck on this painful journey .

[masraum]

thoughts and prayers are with you and your mom, Shaun.

[greglepore]

Sympathies. My dad lived to 99 and never had "dementia" per se but in his last 5 years he had big personality swings - paranoia etc.-in part from living in assisted living (nice, but I liken it to prison). Antidepressants helped a great deal, not a cure, but a help.

[herr_oberst]

I'm also sending sympathies, Shaun. Dad's story is similar to greglepore; I wish you all the best and hope your mom finds the people and the procedures she needs to cushion the fall.

[vash]

damn. horrible news.


my Uncle is in a bad way. sharp as a tack, but in hospice. my Auntie, the dementia came on FAST. she said the same thing to me 40x a few weeks ago. I kept smiling and answering on repeat. it was brutal and mentally exhausting. I dont think she understands her hubby is about to go.

my cousins didnt deserve the double gut punch.

the biggest thing I noticed. my mom and sister have very little empathy. they would get so annoyed by all of it. fuvk. I wouldn't jack with that level of karma. no way.

[jhynesrockmtn]

Can I ask how old your Mom is? Early would be 50’s, 60’s, maybe early 70’s. You mentioned an oncologist. Is she going through cancer treatment? Chemo can severely impact memory and how a person communicates at times. Chemo brain is the term. Also, has she been checked for a Urinary Tract Infection? That’s the first thing to look at when an older person’s behavior changes. Something may be off with her metabolic chemistry.

My sister and I navigated several years of dementia progress with my mom. She moved from Assisted Living to Memory Care eventually. Luckily she had enough assets to pay for that. It's important to get some expert help. My Mom's doctor was helpful and then the caregivers at her facility did a great job. Her personality changed quite a bit and she became very paranoid and delusional. She also had periods where she was dealing with sundowners. It's a tough road.

All the best as you navigate this journey.

[Rick Lee]

I run into this a lot in my work. Sometimes it's obvious from talking with the person, sometimes I only know from looking at their list of medications. I recently had a woman get declined for life insurance due to some meds that are only used for dementia and Alzheimers. This woman still worked at the local city jail, rattled off about five insurance policy numbers and her routing and account numbers without looking at them. She was as sharp as anyone I've met, and you obviously aren't allowed to work around inmates if you have dementia or Alzheimers. So, either those meds were super effective, or there was an error in her records. If a diagnosis is pretty firm, I'd look into getting on those meds.

[Zeke]

The first thing to understand is that you cannot do anything to prevent, stop or slow the situation down. There are medicines, of course, but they aren't anywhere near called a path to improvement.

You decide on how you are going to handle this personally and I don't mean what you ae going to do for her. Of course you are going to help and support her but you have to take care of you. Yes, there is help for you but it's 99% group oriented. So if you can do that, it's a way. AFA one on one help, good luck.

There are more people dealing with this than you imagine.

[LWJ]

My heart goes out to you. My MIL is slipping. Not bad yet, but there is clearly a slip. She is a lovely wonderful person. Not fun.

[ted]

Mil suffered Alzheimers and was in a memory care unit for 10 years.
She was lucky to receive great care as she had a good long term health care policy.
The policy saved her assets and paid out more than a million for her care over 10 years.
My wife and I have each have a 10 year LTC policy.

[Shaun @ Tru6]

Originally Posted by Roswell

I was the care giver for my mother for the last 5 years of her life. She suffered from Alzheimer's and dementia. She went through severe personality changes and mood swings, sun downing, it was very overwhelming.

I can not overstate how important it is that you find a geriatric psychiatrist for your mother. This will truly help your mother and save you.

Has she signed a medical Power of Attorney appointing you the POA? If not, you need to get one signed ASAP. You have a rough road ahead, one that will require you to make hard decisions on your mother's care. Having the medical POA will make it so much easier.

May God be with you and your mother. Please reach out if I can help in any way.

Thank you very much for sharing, I appreciate it, definitely helps. Yes, I got POA and healthcare proxy over a year ago. The former was critical in managing my mom's life, other than her cancer, didn't think I'd need the proxy for some time.

I will look for a geriatric psychiatrist tomorrow. Thank you again.

[Shaun @ Tru6]

Originally Posted by jhynesrockmtn

Can I ask how old your Mom is? Early would be 50’s, 60’s, maybe early 70’s. You mentioned an oncologist. Is she going through cancer treatment? Chemo can severely impact memory and how a person communicates at times. Chemo brain is the term. Also, has she been checked for a Urinary Tract Infection? That’s the first thing to look at when an older person’s behavior changes. Something may be off with her metabolic chemistry.

My sister and I navigated several years of dementia progress with my mom. She moved from Assisted Living to Memory Care eventually. Luckily she had enough assets to pay for that. It's important to get some expert help. My Mom's doctor was helpful and then the caregivers at her facility did a great job. Her personality changed quite a bit and she became very paranoid and delusional. She also had periods where she was dealing with sundowners. It's a tough road.

All the best as you navigate this journey.

My mom is only 79. Her mom passed at a young 76, her dad at 92 and you would think he was 72 based on activity level (still cutting down trees and stacking firewood) and how he looked.

Her treatment has been on and off, she's stable now after a scare a few months ago.

[Shaun @ Tru6]

THank you all for the kind words, it helps. The rollercoaster is mentally and emotionally draining but I keep thinking of how she must feel and push it aside. I quickly had to learn she wasn't herself and move on from the battles.

[Shaun @ Tru6]

Originally Posted by rfuerst911sc

I would recommend some in home care , a health professional that can come in 2-3 times a week just to check on her . That takes some stress off you and more importantly a trained professional that can monitor the progression of the disease . Obviously her regular doctor stays in the loop .

Unfortunately if she lives long enough and the disease progresses you may have to consider 24 hour care , either in home or at a facility . As a working man it is very tough for you to provide around the clock care . We are currently in the same situation with my 93 year old MIL . She is in a very nice assisted living facility that also has memory care .

Everything I described above takes $$$ . Does she have good insurance ? I assume SS income anything else ? You might want to ask at a local assisted living facility what types of financial assistance programs are available for the elderly . Ask friends/neighbors if they are going through similar and what are they doing to cope/manage . I wish you luck on this painful journey .

We grew up lower middle class with no investments. I still vividly remember tracking stocks every day in 7th grade and when my dad found out he threw away my notebook and said it wasn't for us.

The best plan is for my gf and I to buy a house that she can live in too.

[Cajundaddy]

Sorry Shaun, this is a bumpy road ahead. We first noticed my mom doing compulsive sorting back in 2008. She passed away from Alz/dementia in Jan 2023 at age 89. She was really cooperative through the whole process but I know she was frightened as her mind slipped away.

Get finances together and see if she qualifies for benefits. My Dad was a Navy veteran and that added a nice cushion to the expenses to come. There are probably some Alz family counsellors in your area who can point you in the right direction for benefits and also assist you coping with this rather tragic disease.

Once it was clear that my mom could no longer live independently we found a highly regarded senior living facility with private apartment and community meals and activities. This was good for about 5 years and then she just needed more personalized care so we found a residential care home with only 5-6 patients and it was very close so we could visit often. We did the best we could with the hand she was dealt but it is very difficult to see them slip away a little every day.

Best wishes!

[rfuerst911sc]

My MIL gets some financial assistance from the military because her first and second husband's were in the military . Every little bit helps .

[Zeke]

Actually a licensed counselor is a viable way. They typically offer a full hour as much as once a week. Seeing a psychiatric doctor that often, that long is expensive. You sort of have to flow with Medicare and what they approve is automatically approved by any supplemental policy.

Reading a book on Medicare written by an independent author is vital reading. The Medicare annual handbook doesn't tell you much. Once you read an in depth study of Medicare you will understand what I mean. There is a lot more to it than letting a doctor's office billing do this. Or hospital.