Fuck me, man! I don't wish this shit on anyone.

[Glamrock]

Mom was diagnosed with Lewy Body dementia. She's staying with me at the moment....and probably permanently. Good lord. Is it suicide or the easy way out if I just off myself? Obviously, just kidding. But damn, man! This is some rough, rough shit.

[Texaswitchy]

1. Been there, done that.

My mother went to a nursing home.finally.

Start looking for help.

It is hard.

[alwaysinasnit]

2. I feel for you. Mom died 7 years ago but she lived with Alzheimer's for about 15 years before that.

There are no easy answers.

[jimfields33]

3. So sorry to hear this

I looked it up. Robin Williams had this. I definitely think getting help is paramount as the poster up thread said. Best of luck.

[Diamond_Dog]

4. Yes, look into hiring help.

We had a home health aide stay with my mom all day when she lived at my sister’s, even though my sister’s husband worked from home.

It’s still a very rough thing to go through and I can imagine this must be very stressful for you and Mrs. Glam. I am sorry.

[Glamrock]

5. At the moment, me n Mrs. Glam both work at home.

And...at the moment, we aren't at a place where her place is permanent. She has just enough of herself left that she still talks about going home. We had brought her over here because my aunt, who was trading off with me a week at a time, was no longer able to to contribute. So not her fault. She has macular degeneration. She finally got to a point that it became obvious that she really wasn't able to help. Brought Mom home with me at least until she was vaccinated. We are two weeks past that now. But no serious push to go home as of yet. This seems to be her new reality. But if I ask? Oh man, it's gonna be a knock down drag out with tears and everything. Hoping to just cruise at this pace and hopefully she forgets? I know that sounds shitty. But, well, I... Fuck I don't know. I never even had kids. This is so out of my wheelhouse, mama. I'm hoping in another 4-6 weeks we can start bringing in people to help.

[Diamond_Dog]

13. Some other folks who have gone through this here are offering excellent advice.

Don’t beat yourself up if you can’t handle it anymore and it gets to be too much. Start checking out what care facilities are in your area. I don’t think even Mother Theresa could handle a dementia patient 24/7.

A friend of mine’s mom lived for 15 years in excellent health but her mind totally gone ... her mom stayed in a facility that was close to her home so they could have her over for Sunday dinners and at other times and it worked out really well. I don’t know the mental situation your mom’s in but maybe something like that, near to your home, might work? I know, not for everybody’s situation, just an idea. My heart goes out to both of you.

[Glamrock]

35. Thanks mama.

I really appreciate the advice.

[appleannie1]

20. Taking care of elder people is never easy and not everyone is suited to do it.

Don't beat yourself up. I had worked in a hospital when I was younger and when my father's cancer attacked his spine and he could no longer work, I brought him here and we put him in our bedroom in a hospital bed and slept upstairs by doubling up two of the kids. When my father-in-law had a major stroke that affected both sides of his body, one side completely we put the hospital bed in the dining room since it was easier to take him around in a wheel chair from there. Many times in the years he lived with us I was thankful he could not walk. The stroke had had almost the same effect as dementia and he became childish. At least I could be in the kitchen cooking and know he was in the lift chair in front of the TV where I had left him (I had to hide the controller for it because if not he would play dump truck). You will have your hands full in a couple months and she will need to be watched round the clock.

In the middle of my father- in-law living with us, my mother came down with cancer. We simply put another hospital bed in the dining room.

I don't know what services you have available where you live. I was able to get 12 hours a week of free care from the Agency on the Aging. You will have to look into things like that because they are not advertised. Talk to her doctor or the family services at your local hospital.

My one great uncle got so bad that my cousin had no choice than to find alternative care for him. He lived for almost five years not knowing who the people were that came to visit him every couple days. Hopefully it does not come to that point with your mom but if it does, do not feel guilty. You have to make choices based on what is safest for not only your mom but also you and your wife. Take care and best of luck to you.
And do your research now and keep phone numbers somewhere you can find them. That way, if something occurs, you won't be rushed in trying to find care that is suited to your mom's needs.

[Freddie]

6. Seriously, start researching nursing homes

They’re equipped to handle dementia issues. Don’t feel guilty.
My best friend insisted that her mother never go to a nursing home and dealt with her Alzheimer’s for 15 years (!). Her mom was pretty healthy in body and mobile, but her brain was totally gone. The last couple years they got a home aide but it was still awful for them. The mom qualified for Medicaid (in PA, Medical Assistance) so a certain number of hours was “free”. Check that out also.

[spinbaby]

8. I second that suggestion

In my experience (and I’ve had too much experience) it’s best to get your loved one into a nursing facility sooner rather than later. Two reasons for this: First, you want to be able to take your time to find the right facility. Second, you want to put them into a facility while they can still make new memories, so they can remember where they are. My poor father in-law went to the nursing home too late and, for almost two years, had no idea where he was because he couldn’t remember where he was.

[brewens]

7. Sorry to her that. I had older parents and lost them a long time ago. I have always been jealous

of friends that still had their parents around, but I see what they go through when they near the end. It's never easy.

[pnwest]

9. I feel for you...

The circular conversations, the same repeated questions...and the heartache that goes with seeing them decline. Dementia is terrible. I watched my mom disappear one memory at a time. There’s no shame in not being able to deal, it is round-the-clock worry and care. If she’s insolvent, see if you can find an institution that accepts Medicaid in their dementia unit.

[MerryHolidays]

10. Glam, take care of yourself and then the family

It sucks, but hang in there. There's not much I can offer on the medical side, but do the best that you can. That's all you can do.

One thing: research the hell out of every source you can think of to see if there is assistance of any sort (e.g., insurance, governmental, volunteer, support groups etc). For example, is your mom on Medicare? If so, are there any supplemental plans that can assist with home healthcare for your mom? If she has private health insurance, check to see what help you can get by studying the plan. Again, this is a bit beyond me, but just trying to help if I can.

We're all there for you. Wish you the very best, for you, your wife, and your mom.

[BoomaofBandM]

11. Respect for taking this on. Just know your limits. Be strong. Give Mrs Glam lots of hugs.

[Buckeye_Democrat]

12. I know what you mean.

My father suffered from dementia, and that was so hard.

My mother could help at that point since she was still mentally healthy despite her age.

My brother and me, who provided almost all of the help among all of our siblings, were basically relieved when our father finally passed away from a massive stroke. That sounds horrible, but it's the truth.

Then our mother suffered a stroke about a month later, and her mental state also significantly declined in the following years. Even worse than our father by the time she passed away!

I feel like it took years off the lives of me and my brother -- who was legally blind while living with them, so my eyes were needed frequently! I couldn't have moved away from this area during all of those years without feeling terribly guilty about it.

Meanwhile, our siblings were regularly enjoying their far less stressful family events... which was always their excuse to never help us in the first place.

[MerryHolidays]

14. Support groups

Google something like this for support groups: "lewy body dementia support groups"

There are a lot of them out there that can be good resources. Here are a few that I found:

https://www.lbda.org/local-support-groups/

https://www.ucsfhealth.org/conditions/lewy-body-dementia/support

https://www.nia.nih.gov/health/how-care-person-lewy-body-dementia

I find that research is often therapy when solving a problem (but, then again, I suppose I should since I'm a lawyer and that's kinda' what lawyers do!)

Take care, bro.

[CentralMass]

15. I worry about burdening my kids with something like this.

I'd probably take an extreme hike on a steep trail..

[mopinko]

16. my advice- the sooner the better.

the more cognitive function she has, the less awful the move will be.

she needs people to care for her, and people to love her. no law says those have to be the same person.
let the pros take care of the mundane stuff.

also. put your foot down. she'll want to go home, but ya just gotta be strong.

[ismnotwasm]

17. It's fucked. I was a long term care nurse for eleven years.

That being said, you do learn to look for joy in the smallest of things, as your loved one loses, well everything. 😞

[MontanaMama]

18. I think of you and Mrs. Glam often...

I read here on DU that you were going down this road with your mother. It's hard hard hard, my friend. My dad had Alzheimer's and after he couldn't stay by himself any more, I thought I could care for him in my home. One day I tried to get him in the shower, he pushed me down and ran out of the house naked and it was a rodeo to get him back. I knew in that moment I needed help. That day of realization is different for all of us. You are doing your best. Please be kind to yourself...every dementia patient and circumstance is different. You can only do what you can do.

[WinstonSmith4740]

19. DON'T try to do this yourself.

A lot of us here have walked this road. All good intentions aside, you can not do this yourself. Start looking now. This is beyond rough shit. My mom had been diagnosed about 3 months before my dad died (no doubt the stress killed him), and that is exactly what the lawyer told my sisters and myself. "I know you want to do what you think is right, but she will get to a point where she is beyond your ability to care for." Keep us in the loop.

[FakeNoose]

21. Here's a suggestion - your area may have an adult daycare center

You could take your mom there each morning and bring her home at night. Some are low-cost or no-cost, others might be a little more expensive. It would be a halfway step till she gets to the point of needing to be in a nursing home full-time.

You'd get a break for a few hours every day, but not lose touch with your mom. Many of us have dealt with the same problem you're going through now. Good luck my friend!

[PoindexterOglethorpe]

22. The stories I see here are exactly why

I am not determined to stay at home forever. I fully anticipate eventually going into independent/assisted living somewhere. Right now I'm only 72 and in excellent health, but getting older, just like everyone, and who knows how long my health will hold up? Plus, I won't want the responsibility of a home at some point down the road.

[Skittles]

23. that is what Robin Williams had

very sorry, Glamrock

hoping you can get some help

[diverdownjt]

24. Whatever's going on man just come back and check in with us...

We Are Her For You!

[Greybnk48]

25. We had to put my MIL in a nursing home because of

falling, and her temper changed. She became verbally abusive too. She did really well at the nursing home with staff who knew what to do. Someone from the family went there every day and that really helped. We had Korsakoff syndrome with my mom too. She lived with my 8 y/o daughter and me before I married my current husband, and that was scary and difficult to handle. You have a lot of support here since this sort of thing is waaaay too common for some reason.

On edit: I wanted to add, it's really sad, it sucks, and it's very, very hard. Sending my love and support to you and your family.

[Ferryboat]

26. Been there done that,

I know what your future holds, look for in home care outfits. In my area I used visiting angels and rescare. Both were very helpful in managing my moms health care needs.

Take care of yours and the missus. Tough road ahead.

[StarryNite]

27. Look specifically for a memory care facility.

We moved my mom-in-law into once she had lost it too much for my father-in-law to manage. Actually we moved them both in together. He died about a year later. She lived on for about 10 more years.

The needs of dementia patients are different. They go through stages. They need to be in a facility where they can't get out should they start wanting to wander literally back in time. The home we had them in consisted of several houses. Each one could house about a dozen or so residents. They had the people who were in basically the same stages together. It was completely fenced in with a big grassy yard with beautiful trees in the center.

My mom-in-law transitioned very well. Her memory was so far gone when we moved her in that she didn't even realize she was in a different place.

There were ups and downs with things that were done. Make sure you have the final decision when it comes to drugs they may want to put her on. And research every drug the facility and doctor may want to put her on. Sometimes they want to put them on inappropriate drugs to "quiet" them.

There will be a definite learning curve for you. I wish you the best of luck. You will get through it and there will be many things to smile about along the way in this new journey in which you are about to embark.

[Bmoboy]

28. everybody has stories

My mom took care of her father-in-law for about a year as he died from cancer. She had help from the retired nurse next door.

Then my mom took care of my dad after his stroke for three months before he died, with help from the former corpsman next door.

My mom passed quickly in hospice after a massive stroke.

My wife moved in with her mother to care for her mom in her last three months of life with drop in aides.

Now my daughter-in-law has been diagnosed with invasive breast cancer and my son gets to care for her and their son who has Down's.

"We are here and it is now, further than that all human knowledge is moonshine." - H.L. Mencken

[Rizen]

29. That's rough. I had to take care of my grandma who had that.

She'd have hallucinations of things like bugs crawling on the computer screen or that the appartment had smoke in it.

[turbinetree]

30. I can relate to what you are going through, my wife's parents have dementia, 90+ years old

and my father has it also and he is going on 91......

[BobTheSubgenius]

31. My mother didn't have Alzheimer's, but what she had was virtually indistinguishable.

The only difference was a longer, slower arc, and there is no diagnostic for it, unless you count autopsy. My father looked after her at home for ages before we knew FOR SURE there was something killing her brain, then a good 10 years after that.

It hastened his death. I'm sure of it.

[Under The Radar]

32. Take care of her, do all you can for her.

The exhaustion is much better than the guilt of not doing so.

[TygrBright]

33. Yes, it is. Holding you and your family in my heart for strength. n/t

[jmbar2]

34. I am so very sorry.

Went through it with my dad. Here are some suggestions:

While your mom is still reasonably cognizant, start creating a "Memory Book" of her life to take with her to the nursing home.

Scan photos from all the high points of her life - birth, childhood, school days, prom, wedding, kids, vacations, hobbies. Label and date everything, perhaps telling the story of her life. Include group family photos with all the names and birthdays. But keep it short enough that a nursing home staff member can review it with her in one setting. Her whole life in 15-20 minutes.

Put it in a nice ring binder. It will help her future caregivers engage her in conversation, and get to know who she was before this terrible disease took her mind away. The older memories tend to last longer, so the book will jog her memories of the joyful times in her life.

Perhaps make some CDs of the music from peak points in her life. When my dad was nonverbal, he could still be brought back for a few minutes when he heard Louis Armstrong and the Hot Five.

The work that you put into it now will also help you in the future when you have to plan her funeral.

Take care of yourself, and keep us informed. You are a solid person here on DU and we care.

[flotsam]

36. Rule one: No fucking guilt!

Been there. Do what you can but beyond that you simply can't. As my Mom faded my truck driver brother converted himself into a tender personal care nurse for a year and a half, and then two, years later, when he was stricken with cancer and over the next three years I did the same. He amazed me and then I amazed myself. And he left me a letter saying "Fuck guilt, I know the help you gave me and I love you for it. I know what you do will be every bit of what you are able to do." He was right. I did my best. No one owes more.

[blm]

37. Tough times, but, you'll do better than you think.

You’re a good soul with a great sense of humor and you have a support system here.

[Swede]

38. That is some tough news Glam.

Hang in there, and I hope for the best for you and yours.

[littlemissmartypants]

39. There's lots of help out there. Facilities with Memory Care units can be excellent resources.

Some provide respite care which is very important for helping caregivers with their sanity. Also, check into possible adult day cares in your area. They are another source of support for caregivers and can be enjoyable for the affected family member. I hope you are able to find the balance you and your beloved ones deserve.

Stay strong.

❤

[leighbythesea2]

40. My father-in-law had it

It's cruel. My mom has Alzheimer's. But as hard as it is, the physical component isnt as challenging as Lewy body. My best advice is try to figure out the long range plan now.
In speaking with a friend and attorney whos dad had Alzheimer's--- I learned any assets we wanted out of my moms name, in order to get Medicare/Medicaid help later needs to be done 5 to 7 years prior.
Thats a big deal.
Since my mom has income from a pension this plan was never going to work anyway. But HAD i needed that option, knowing 7 years ago would have been critical.
The end care gets expensive.
I will be thinking of you. Im so sorry to hear this.

[a kennedy]

41. ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️. We are ALL here for you.

[Ilsa]

42. I hear you. My MIL has dementia, but I don't know if it is Lewy body.

I'm the one in charge of her care at home, taking her to appointments, etc. She tries to have a conversation with me, and if I don't agree with her 100%, then she says I'm arguing with her.

Then she takes her attack in a whole new direction, by insulting my family of origin, insulting me, and saying stupid stuff about us that is all imaginary. And when she knows she's made me angry, she smiles.

I can't stand to be around her. She's psrsnoid and a sociopath. I can't wait to send her off to a home. I'll wave goodbye and that's the last I'll see of her.

[Ilsa]

43. I hear you. My MIL, with dementia, has had a string of successive

UTIs, which cause her to have delirium. Right about the time she finishes her cipro, she gets diarrhea and another UTI. She wants to be independent, so she wanders around trying to figure out what to do, leaking diarrhea everywhere, including her bed, carpet, etc. This morning, it looked like someone had tossed a feces grenade in her bedroom. Primates in the zoo ain't got nothing on her.

So, I'm gonna have Egon (RIP) from Ghostbusters send me a trap and containment system for when the shit flies!



My heart goes to you and others in our predicament. You're a real mensch!

[JudyM]

44. How are you holding up, Glamrock?

Hoping things are manageable, at least…

[onethatcares]

45. as I read this I wondered

if anyone had to deal with this and their wife or husband and how they did deal with it.

Just thinking ahead and damnit, i'm scared.

[XanaDUer2]

46. I'm scared too

I fear something happening to my partner