This just flat out sucks

[Glamrock]

As some of you know, my mom was diagnosed with Parkinson’s and Lewy Body Dementia. It’s truly horrifying. The speed at which Lewy Body progresses is unreal. Truly. She was driving and going to work two years ago after the Parkinson’s diagnosis and a drug regiment was put in place. Here is an example of a conversation we had yesterday after leaving physical therapy.

So it’s looking like Russia is going to invade Ukraine. (We’re Ukrainian on her fathers side)

Yeah, there was a , uhm, thing. Where they make the stuff that you eat. We were…we took the thing that you hook up to thing for the battery. And we peeled it. But we had to throw it away because it went bad. But after awhile….there was a….uhm. The thing in the mail with the pictures. We did that. And everybody laughed.

Okay, okay. What made you think of that? (As if I have clue fucking 1 of what “that” is). I just told you that your grandfathers country is about to go to war with Russia.

I saw that. Andy and Barney were talking about it the other day (Andy Griffith and Barney Fife from The Andy Griffith show. Only thing she’ll watch. If I hear that whistling theme song one more time, I swear to god, I’m climbing a tower with a high powered rifle. Ya know?). And we need to get some…uhm…the things that Aunt Bea snaps on the porch. If they…uhm…. If they………..

Yes?

Is church today?

It’s soooo frustrating. And random crazy shit. Like she can sing along to every Beatles tune on the radio and remembers every word. But can’t string a sentence together most of the time or follow the most basic instructions!

Like, I took her for a UTI test after physical therapy to be on the safe side. Told her at minimum three times, pee in the cup at the front of the toilet. Cool?

Yes yes.

So you’re going to pee in this thing, not the toilet, right?

Yes yes. I’m not a child!!!!

She finishes up and not one fucking drop in the container. Gahhhhhh! Now we have to hang out for another 45 minutes until she can pee again! Fuck me.

On the one hand, this thing and the speed it moves is absolutely, unequivocally horrifying. On the other hand, compared to say Alzheimer’s and it’s slow march? It’s almost a godsend.

And therein lies the rub. The guilt associated with a thankfulness that your mother is deteriorating so rapidly. And the questions you ask yourself. Is this rapid deterioration good for mom? Is it a mercy? Or are you “thankful” because you’re just a selfish asshole? (I’m weeping as I type this because I honestly don’t know the answer.)

I don’t know man. I’ve never had children and just kinda wandered through life doing for me or my wife. Truth be told, mostly for me. And this thing is tearing me to pieces.

Thanks for letting me vent DU. I’ve been kinda missing in action due to this situation, but you all have always been here for me and it’s a safe place. Sorry if I’m bringing down your day.

Sincerely,
Glam

[CurtEastPoint]

1. Hon, we are with you. Don't you worry about bringing down anyone's day. xo

[mopinko]

2. i dont know a single person who wants a lingering death.

or one that wants to put their family through that.

but fwiw, my few years as a hospice volunteer taught me that there is value in those last days.
so many people get a bad dx, and their 1st reaction is- imma check out. not me. i wouldnt do that to a dog.
but when they get into hospice, their pain is treated, their symptoms are treated, their needs are accommodated, they can accept the decline w grace.
if she isnt in hospice yet, wait no longer.


xoxo. this is one of the hardest things you will ever do.

[MN2theMax]

3. You're not a selfish asshole

You are a caring, loving, helpful person. The rapid progression is a mercy.
My father fought Parkinson’s for thirty years (like hand to hand combat fought). It was a long, expensive, guilt ridden struggle.

Bless you for the loving care you are providing. Try not to let guilt eat you up. You are doing all you can against a horrible disease. Don’t forget to take care of yourself along the way.

[LakeArenal]

4. Maybe find a support group.

My mom died from decades of Alzheimers. Was
Not a nice quiet patient. Tiny woman huge racist, complaining, paranoid mean.

I have guilt that I was glad it was over. Guilt that I miss my mother-in- law way more than my mom.

My point is there’s going to be guilt anyway it happens. Even if you had nothing to do with the actual end.

Best vibes always Glammie and Mrs Glammie.

[people]

5. Sounds very, very difficult

I hope your mom doesn't understand what's happening to her. This sounds so hard for you. Wondering if your mom lives with you or whether she lives alone. So sorry about all of this for you and for her.

[nancy1942]

6. Been there.

It's a special kind of Hell; your emotions are normal; extreme mood swings are par for the course. Anger, relief, anxiety, etc. Ups and downs; you have my sympathy. Watching a loved one basically slowly losing themselves is torture. You're not alone.

[MerryHolidays]

7. Take care, man

What you are going through is totally understandable.

Here's a support group: https://www.lbda.org/local-support-groups/ . If you google "parkinson’s and lewy body dementia support group", you'll find others.

I wish you peace, and you're not bringing anyone's day down. That's what friends are for.

[XanaDUer2]

8. I'm so sorry

Vent as much as you need to

[jmbar2]

9. I am so sorry.

I once read a Scottish philosopher who said that the purpose of all the challenges at the end of life, is to plant the seeds of compassion in the younger generations. Anything that increases compassion in this world is blessing. But it is a very hard gift to receive.

One suggestion on the pee tests - clinics should have a device that fits under the toilet seat to capture the pee. I'm surprised they didn't use one. Next time, perhaps you can request it.

Hang in there. My heart goes out to you and your mom.

[stopdiggin]

10. yes. it. does.

and you have every right (as I'm sure you know) to feel exactly that. And then, of course, to feel guilty about it. Heartbreaking - both ends of the see-saw. I hope you're also 'present' enough to hand yourself an occasional pat on the back - for being a pretty darned decent human being. 'Cause that's also solid fact.

vent any time, bud. 's why we're here.

[pandr32]

11. Frustrating and heartbreaking

My Mom got dementia (she has passed on) and we watched her do some pretty weird things; like trying to pull out her teeth and clawing at light in the air as if there was a demon there that needed to be killed. It was rather horrifying at times.

Every once in a while it was as though the sun broke through the clouds and she smiled with delight at something and stayed in a happy mood for a while. She talked gibberish but it almost made sense as she pointed out the window at birds flying and other things she noticed. We had conversations that made sense to her. Sometimes she laughed. She remembered music and nodded along to very rhythmic nursery rhymes (she had been a teacher once).

In the end we had to unpack a whole lot of frustration and emotion, but what was left were those pure moments that transcended everything. Those were experienced in such a way I felt so connected to the essence of who she was and was grateful for the opportunity to get there with her. I also got to let go of all the resentment I had accumulated and nurtured without even realizing it. I blamed Mom for things that happened to me and she really didn't cause me grief on purpose. She was struggling through her own life and making mistakes as we all do.

I am hoping you will be left with the peace I was.

[Maraya1969]

12. My mom lingered on for over a year after Hospice said she would die and I remember wanting it to be

over. At that point she was just laying in a bed sleeping most of the day. She had to be hand fed because she couldn't move her hands anymore. I remember asking a lady from Hospice if I would feel relief after she finally passed and she told me, "Yes". But that is not what happened. Even though so much of it was terrible in so many ways I wish she was still here.

One suggestion: Because my mom couldn't talk I spent a lot of time talking about myself, something I didn't do much in previous years, (long story) I also told her about all the good things about my childhood, like vacations we took and things that she did that I appreciated but never said. It was a great opportunity and I'm so glad that I told her those things. She would smile when I talked.

But it can be maddening also. She had help during the day when she stayed with me but every single night when I was changing her to go to bed she would refuse to let me put on a new Depends. I would have to go through this whole thing showing her how light the new Depends was and how heavy the other one was to prove that she pee'd in it. It was never any different.

I spoke to a lot of people who had been through the same and that helped. I'd say even if she is driving you nuts try and savor your time with her because when they are gone they are gone.

[sheshe2]

13. Vent here as much as you need.

You must take care of yourself too. ❤️

[Duncanpup]

14. Hugs bro

[Duncanpup]

15. Hugs bro

[SheltieLover]

16. So sorry to read what you, Mrs. Glam, & mom are going through.

Please try to find a support group. Perhaps a hospice / palliative care org might offer one?

Take good care, Glam.

[OldBaldy1701E]

17. There is no need to apologise.

You may not have read some of my posts!

I wish I had something more concrete to offer than HUGS but I have some for you regardless. Don't forget to take care of yourself as well. You are doing your mother no favors if you start having issues from not remembering your health as well.

[CaptainTruth]

18. I'm so sorry, for both of you, & vent all you want, we're here to listen.

[c-rational]

19. Be easy on yourslf. Your thoughts are normal and just thoughts. Been, not exactly there, but

close enough. Remember, as with all things, this too shall pass.

[NNadir]

20. I took care of my mother as she died from a brain tumor. I can therefore say I don't know what...

...what you're going through, because when people told me that they knew what I was going through, they didn't.

It is different for each of us.

I was 23 when I went through it. Decades later it seems like it was twenty minutes ago.

Please accept my deepest sympathy. It's tough man.

[crickets]

21. I am so sorry, Glamrock.

Sending all the positive thoughts and strength your way that I possibly can.

[momta]

22. I lost my mom when I was sixteen.

My brothers and I all went through the same emotions you are feeling. She died of cancer--at home, with just us kids and her mom and my dad there to help her (and my dad was pretty useless). For over a year she was mostly bedridden and in increasing pain.

We all wanted her out of pain, but didn't want to lose her. It was torturous.

Be kind to yourself. There is nothing easy about your situation...or hers. Take care.

[BobTheSubgenius]

23. I'm sorry for your plight, and sorry for not having anything profound or helpful to offer.

My parents both went through long, awful declines. My mother from a very slow-developing analog of Alz's, but not Alz's....and my father's slide starting with a stroke. I'm sure that a few years of trying to soldier through my mother's decline on his own hastened his own demise,

By the time he died, he had fallen out of bed and whacked his head so hard he was in a coma for 3 days, but he had already deteriorated badly by then, and was in Long Term Care. He had phlebitis, an enlarged heart, cardiac arrhythmia, diabetes, a certain amount of incontinence, colon cancer and his 7th stroke killed him...but the following day, not immediately.

(I feel that I inherited his apparent genetic strength for survival. For example, both my surgeon and my cardiologist said that my heart was the most damaged [Staph A] they had seen anyone survive.)

I could not escape the feeling that their passing was a mercy on them, and on my sister and I, for which I felt guilty... and guiltier still that I didn't feel worse about it. It was bizarre.

I feel you are at an almost identical crossroads. Very often, IMNSHO, I feel that people wish for their dying relatives to string out every last hour, but mostly because of their own inability and unwillingness to experience grief.

I guess I can only ask - if you were the one in your mother's plight, and could stand outside of it and think lucidly, what would you hope for?

[Cracklin Charlie]

24. No thanks necessary.

Sending good vibes your way.

[Kali]

25. don't correct or argue, it just aggravates both of you

been there, don't pay attention to the words just let them ramble (or sing if that works better for you)

tell stories if she seems to want you to, but don't expect comprehension, it is likely just the sound of your voice that is what is needed. sometimes it helps to let yourself know the person you love is already gone and that you are just helping with the end of the process. no guilt, you are doing the best you can. that is all any of us can do.

[demigoddess]

26. that is what I would want if it were me. that and maybe a small revolver left where

I could blow my brains out.

[dchill]

27. Take care of yourself, man. If you don't, somebody will end up...

...taking care of you. It's not selfish to do what it takes to postpone that as long as possible. I know what I'm talking about.

[hippywife]

28. Completely understand your need to vent.

I'm so sorry you're faced with this. I've been around many people with dementia due to a previous job and also a late family member. Without any doubt, it's the most difficult thing for families to deal with. It's really frustrating, too, so it's okay to feel frustrated. So, vent whenever you feel the need, it's important for your self care during this time.

[mgardener]

29. Here are my thoughts

Do the best that you are able to do for your mom.
That is all any of us can do.

Would any of us wish to be in her situation? NO.

[alwaysinasnit]

30. ...

[kanda]

31. vent away

Consider this a safe space. Many of us have lived through this. My husband had vascular dementia, probably a little frontotemporal thrown in, too. It was devastating for me to watch him turn into a completely different person. Had he known who he had turned into, he would've never wanted to go on like that. I cared for him at home as long as I could. When I finally placed him at a care center he passed one month and one day later, even though he had been in fairly good physical health. I was so thankful it wasn't prolonged, and yes, I felt guilty for thinking that, but I got over it. Prolonging his life would do no good for anyone--not him, not me, not our kids.

I send you vibes of peace. It's one of the hardest jobs there is--caregiving for a loved one. Now my brother and I are caring for dad, but at least he doesn't have the anger issues that my hubby did. And, after a fall before Christmas, we've been able to get him admitted to a care center so now we get to be his kids again, and not the people that help clean up his diaper.

[hay rick]

32. A little guilt is an OK thing.

My wife and I provided care for a dementia patient for a decade. She quit her job to provide and supervise his care and I delayed retirement. I have no regrets now though I had occasional resentment at the time.

Caregiving has costs and pretending otherwise is a useless exercise in self-deception. We try to handle the burden gracefully and don't always succeed. Don't beat yourself up over it. A perfect person may never lapse into frustration and anger, but I've never met one.

[Sunny Daze]

33. My mom also had Lewy Body dementia and Parkinson's.

Many hugs and much understanding coming your way. Lewy Body can be the mean dementia. Before Mom’s neurologist told us to hide all knives or anything that could’ve been used as a weapon, I watched my sweet Mom go get a sharp knife from the kitchen drawer, take it to the living room and repeatedly stab my grandparents photos until I could get it away from her. She continued to be sweet after that but occasionally would flip and her words and actions hurt my dad, my brothers and me all to our cores. We lost her last December and are now caring for our 90 year old dad with dementia…thankfully not Lewy Body. It’s the hardest thing I’ve ever been through and I’m deeply sorry you’re facing the same. I’m here if you ever need to talk.

[The Polack MSgt]

34. If you need to scream at somebody, reach out cousin.

My mom wasted away from dementia. It's heart breaking.

I don't have any words of wisdom for you I'm afraid. Wish I did.

But dm me if you want to, I'll listen.

[Dustlawyer]

35. Going through the same thing.

Mom has dementia when she has a UTI. The problem is that she almost always has one. She forgets to change her adult diapers and pads or drink enough water. Doctors think she also has Alzheimer’s and needs to be tested but dealing with a looming hip replacement surgery.

She gets very defensive when she realizes by the look on your face that she has already had this conversation with you one (usually many) time before. She is deathly afraid of going to a nursing home so any mention or reminder of her problems get ugly quick.

This is tough but we must persevere.

[stevil]

36. It will work out

Someone once said, things work out for the better, they also work out for the worst - but they always work out. All things must pass. I'm going through the same thing you are right now for the second time. Guilt sucks - you do your best. Hang in there and even we don't really know each other PM me if you want to talk.

Steve

[appleannie1]

37. Just hang on to every one of the minutes of your real mom.

And don't feel guilt for anything. The easiest way to get through the non-sensical ramblings is to smile and agree. After my hubby had radiation on his brain for cancer, he would spend hours talking about memories that were a jumble of things that never happened. Now that he is gone, I miss the sound of his voice even it did not make a lot of sense. And find ways to make time for yourself, even if it is only 15 minutes.

[Dave in VA]

38. You're safe here

Take care of yourself. That means mentally, physically, emotionally, and spiritually. This will help you to be a better care giver.

Sounds just like a hundred conversations I had with both my mother-in-law and my mother. MIL passed away in 2016 and my mom last June. Both from complications due to dementia.

Another resource that is available to you is the Alzheimer's Association.

alz.org

Best wishes for you and your family. When it is all over, I hope that you will be able to realize just how strong and loving of a person you really are.

Dave

[Warpy]

39. I hope you have a turntable so you can play those old Beatles albums often

and she can sing along with them. The time will come when even that is gone. Musical memory (along with words) is stored in a different area from speech and is one of the places speech therapists start with stroke patients. Unfortunately, your Mom isn't a stroke patient and it won't work for her.

This is the toughest time for her, she can remember being functional and she's aware it's all slipping away. The toughest part for you will be when she no longer knows who you are and you're scaring her when you want to give her a hug or kiss.

As for having her pee in a cup for the doctors, those days are over. To avoid having a stranger shove a catheter into her to get a sample, you can order test strips at Amazon. Just use a wet wipe before she pees and pass the strip through the urine stream. It's not ideal, but it will work for things like nitrates, which indicate a possible UTI. If it's positive, then you can justify taking her in for a mini cath sample, something they'll do before prescribing antibiotics.

Yeah, Amazon sells everything. https://www.amazon.com/Urine-Infection-Test-Strips-Leukocytes/dp/B01EHZMXQC

[PittBlue]

40. So very sorry...

May you and your Mother both find peace.❤

[LoisB]

41. I am so sorry. All you can do is the best you can. If you are asking yourself the questions, you

are definitely NOT a "selfish asshole". If you were, you wouldn't care about the answer.

[2naSalit]

42. My two cents...

In addition to the wealth of good advice and knowledge shared above.

I empathize with your situation completely. My mom, who passed on New Year's Eve a year ago, had Parkinson’s and Lewy Body Dementia, she was 93+, she died from CoVid19-A before the vaccine was available.

Under agreement, my two youngest siblings gradually ended up being executor of her estate and personal care attendant. One took care of the business end and the other the daily care 90% of the time, the executor also provided care but their work made it hard to fulfill that position. The care-giver was paid by the estate for expenses and a small stipend.

One of the changing from good to bad situations was that mom lived with her long time boyfriend who was a good caregiver for a time but eventually became an obstacle to providing mom with the care she needed and somewhat abusive because he couldn't deal with her needs. But he also wouldn't let anyone but family come to the house to care for her let alone stay there and care for her. It was a more than a decade battle, I didn't have the kindest words for him at the burial.

But I digress...

My position in all of it was to be the counselor for the siblings as they endured what you are enduring. We had a pact to be open and honest about mom's condition and her care situations as they changed. I was, at least, able to help them understand that they are doing what is best within their means to keep mom safe and as healthy as possible, fed and bathed, got her PT and all that, all while dealing with her commonlaw spouse who is an ubertrumper and controlling asshole.

The thing to do with your dilemma is to,

First, give yourself a break from bashing yourself. You are 100% doing the right thing just by being there and giving a shit.

Second, this is the path you're on for now and it's good that you're looking for a map, you still have your shit together, bro.

Know that it will be over at some point and wishing for your mom to pass because she is only going further into the abyss with a one-way ticket is not bad. Her suffering is immense and wanting that to end is natural, only our culture views death as some evil thing when it is merely a portion of the cycle of life. This rationale should comfort you.

This situation will test everything you know about yourself, be strong and know that you are still able to reason but also, that some things we were led to believe just aren't so as you will find when this is all over and you review the big picture.

Your mom will not be making sense very often anymore so the best way to handle it is to determine if what she says is coherent, if not, let her go on and share her experience, it will make her feel better. Your job is to know that she's got movies going on in her mind that you can't see, she's just sharing them with you. You won't be able to reel her in to your side of the perception screen so don't hurt yourself trying, no matter if she gets nasty about you and suddenly sees you as the enemy. It fucking hurts but at that point, you know she's already moved on to the long footbridge to the other side.

I'm sorry that you are suffering this plight, it's a tough one and I send you all the light in the sky. I hope that reading these comments from your DU family will help you get through this.

Give your love to your partner, hold her dearly and be glad you have someone to hold during times like these. But don't forget to hug your mom too, she needs to know she's loved, it really will matter to her even if she can't reciprocate.

[Claire Oh Nette]

43. big hug, Glam

lost my mom to stroke, my birth-mom to ovarian cancer, MIL to Parkinson's in a six year period.

Slow and lingering, quick and unexpected, makes no difference. It's Mama, and Mama's gone.

"The guilt associated with a thankfulness that your mother is deteriorating" is grief, Glam. It starts before we lose them. They teach us everything except how to live without them.

Grief is the highest honor we have for our moms. All that love with no place to go.

another hug.

[KPN]

44. Sorry to hear and be easy on yourself Glam.

If it was Alzheimer’s you and your Mom were dealing with, I’d venture to say you’d be having the same guilty feelings about yourself. I did. Whether it’s a long drawn out or comparatively quick process, it’s natural to question your own responses and feelings. We all do it.

Keep your chin up and be kind to yourself. It’s certainly not an easy thing you are dealing with man. Peace.

[highplainsdem]

45. Glam, I'm so sorry. What you're going through is terribly difficult.

It's good that you can vent here, though, and I hope you'll take very good care of yourself, and NOT beat yourself up because it's so hard to cope with the caregiving.

[LittleGirl]

46. My MIL has the same diagnosis

She’s unable to speak anymore and is struggling to swallow solid food. It’s liquified food now.
She’s depressed because she can’t communicate and is lucid.
She spent a night on the bathroom floor one night about 5 months ago because nobody knew she got up by herself. The Lewy body made her fall over several times and it’s sudden and unpredictable.

She’s been deemed terminal. My hubby flew to San Francisco yesterday. He wanted to see her again before she forgets who he is.

It’s heartbreaking. My sincere condolences to you and yours.

[mahina]

47. Music is an amazing thing for dementia victims

And all of us.

My friends Mom can sing every Hawaiian song and play ukulele accompaniment. Long songs in Hawaiian. Otherwise struggles. Her music is so beautiful!

Good luck with all Glam. Be gentle on your good self. It’s rough. Aloha

[mnhtnbb]

48. My husband had LBD.

When he was first given the possible diagnosis, we discussed the option of not riding it to the end, because it's a horrible, progressive, incurable, degenerative disease. As a psychiatrist and psychoanalyst, his life had been all about the mind. And he was losing his. We actually almost bought a place on Bonaire, because it is Dutch, has medically assisted suicide available. But my husband decided there was nothing wrong with him and that he was only "aging" and refused to go through with the offer we'd made on a condo there. As time went on he became more aggressive and verbally abusive.

I spent almost a year in therapy trying to figure out how to live with the situation. I had almost left him about 10 years earlier after 20+ years of marriage, but didn't. It's my big regret. So I know about guilt. After 32 years of marriage, I left him, to save myself. Both my sons turned against me. Six months later his first attempt at suicide was on my birthday. He ended up in the geriatric psych unit for 2 weeks. The hospital wouldn't release him without someone living at home. So my oldest son and his partner moved in. After 3 weeks my son emailed me to apologize for everything he said, and told me he was done and moving out. The youngest son stepped up and found a retirement place for his father and helped him move.

We put the house on the market. The week before it was due to close, my husband blew his brains out, the day after his birthday. My oldest son told me he was actually relieved, because he wouldn't have to listen to him talking about how he would do it anymore. Apparently he'd been talking about suicide all the time, for the year since I'd left him.

Do what you can for as long as you can and then let go. Take care of yourself, too. Don't feel guilty. We all have limits and we all have to do whatever we can to survive.

[Bayard]

49. It truly sucks

So sorry to hear you going through this, but we're here for you.



My Mom had Alzheimer's. I kind of miss the hour long phone conversations we would have, where she would tell me about her latest fear (she would watch a movie, and think it was real), or paranoia, and I would mostly calm her down. I was in Calif. at the time, so she would call me at least a couple times a day. She would have been 91 last week.

I miss her. Believe it or not, you will miss your Mom too, and remember the good times. And I love Andy Griffith.

[Deuxcents]

50. Found you here today, Saturday..

After reading your post earlier, I decided to look for you and now I can understand what you were saying. The Caregiver is usually the person who needs it the most but rarely asks or tells about the issues or situations. Now, we’ve got an idea n hope you’ve e found a wonderful support group here. So many heartfelt wishes for you says a lot. Music does smooth the soul and I have enjoyed your selections. Take good care of yourself n keep in touch..I’m sure everyone feels the same.

[AwakeAtLast]

51. My Dad has Parkinson's

His neurologist told us to watch out for anger. Boy he wasn't kidding! Dad gets downright nasty sometimes, and Mom gets the brunt of it. His short term memory is going and trying to walk after standing up takes longer and longer.

I'm so sorry you have to go through this, and I completely understand where you are coming from!

[uppityperson]

52. I am so sorry, Lewy Body sucks. It sounds like she's thinking about food, stocking up before the war

Maybe preparing to make sure you have enough food. Potatoes and peas. You sort of don't try to make sense of it, but ride along in a haze.

Best wishes, it's not something I'd wish on anyone. There are no easy answers.

[Skittles]

53. so sorry Glamrock

as if the pandemic wasn't even stress

hey just curious, would your mum wear some nice headphones for the TV, this worked out well for a coworker whose dad with alzheimers / heard of hearing was driving him nuts with the loud TV

[I_UndergroundPanther]

54. Next time she has to pee

In a cup ask for the thing that catches her pee that fits under the toilet seat its called a hat.

When my mom was starting to have supra nuclear palsy,that made getting lab work a lot easier. I would help my sister with her later when
She was with my aunt who took care of her in her last year that hat became a lifesaver.

Take care and you arent ruining my day. Hugs to you.

[live love laugh]

55. Caretaking is hard. It's impossible to do it perfectly.

Give yourself a break and remember to put your life vest on first.

[flying rabbit]

56. ...

[JudyM]

57. Feeling you.

I’ve become the caregiver for my mom, and while the scenario isn’t exactly the same, the crazy emotions are similar. There is so much heart and wisdom from fellow DUers in this thread, you know you are being held. I’d just echo two things: to savor for an extra minute whatever moments of connection and affection you can get, and to go heavy on the self-compassion. I’ve been leaning hard into the insight timer app and it has pretty much saved my sanity… there are talks and groups dealing with whatever I need, it might help you too. (They even have live music chillout sessions, including handpan and others… to help you take a breath.)

Wishing you strength.

[3Hotdogs]

58. My mom's deterioration was long and slow... 9 years in the "memory care" unit.

She always recognized me but the stress of, "When do I go home? Why doesn't my sister (dead 9 years) come to visit? What time is my father coming to take me home?"

Our responses: "Taxi will be here to take you home as soon as he gets gas in the taxi. Julie is working today but she will come to see you on Sunday. Your father is working at the post office. He will come to get you when he gets off work."

So yes, I felt and still feel guilt... "When da fuck will this be over?" The "home" was an hour's ride each way because it was the only place we could afford and we could visit once or twice a week to make sure she was O.K. Then she finally got placed into a V.A. home that was only a 30 minute ride. Lucky for me, I was/am retired.

And I'm glad she's gone. She died in 2017. And I still miss her.

You will have mixed feelings about her and yourself during all of this. It is normal. Don't beat yourself up over it.

But there were also good times... she loved kids and when we brought a baby or toddler grandchild, the world would brighten. (If your mom or dad were veterans, go the the local V.A. office and sign her up for benefits.... even if you don't expect to use it. There is supposed to be a V.A. office in every county of every state.

CONVERSATION: This is probably the most most important thing I can offer. As time goes on, you will have fewer and fewer conversations with her. An earlier post mentioned the movies going on in her head that you can't see. Try to follow those and join in and try to make sense of what she is experiencing. You will be less and less able to initiate a topic and have her follow it. We are conditioned that being with people is to engage in "back and forth" conversation. With her, it is not that dialog that she is enjoying. Rather, you just being there is what matters.

I look back at my experience with my mother's decline. I ask myself as I type this, "Was there anything I could have done better?" And I can't think of anything. When your mom leaves, it is my wish for you that you can look back and answer that question in the same way.

[TNNurse]

59. Lost my mother to Parkinson's and dementia 31 years ago.

She lost the ability to speak or make facial expressions toward the end. We kept her at home with caregivers as she asked. We were told not to leave our homes and care for her as she had done for her mother. "I do not want you to feel the way I did". We were younger than she was when she went to stay with own mother.

The confusion was so very hard. The inability to speak and respond to us was horrid. There was one bright moment when my sister visited. A visit was good if she spoke at all or smiled (that ended though). They were watching "Jeopardy" and my sister knew that Mother knew the final jeopardy question. She asked her the question and said.."You know this". The question was the Nobel Prize for Literature in 1938. Mother answered "Pearl Buck, The Good Earth". She was a teacher and librarian. They were the only words she spoke during the weekend.

This is hard, it is your mother. Many of us understand. We will read your words and appreciate what you are doing whenever you feel the need to share.

[SWBTATTReg]

60. My dad had Parkinson's but not LBD. The Parkinson's took him roughly 5 years ago and it ...

tore all of us kids up. It was difficult to deal with (and my mom too, in her 80s).

Still impacted by the negative experiences but the time I spent w/ my dad during this time was priceless as we did spend quality time together (I was working then, took off), and actually had quite a few laughs, good moments. Treasure those moments.

My heart goes out to you and yours.

[SallyHemmings]

61. Words can't express how I feel for you

Watching our beloved Mum endure this cruel disease is something I’ll never understand. Her life was hard enough, then this??? My grandchildren missed out on her wisdom and support. But her strength came through in the end. No longer able to speak, she refused to eat. Her beautiful little male nurse wept at meal time. I joined him on a few occasions and it was evident Mum was over it. She passed peacefully a few days later. That strength supports ME on my tough days.

It sucks. Full stop.

[lark]

62. Hey Glamrock, vent all you want. Lots of us have had hard times with our older loved ones.

Every situation is somewhat unique and you landed in the middle of a morally ambiguous one that would test the soul of a saint.

Your mom is so lucky to have you to take care of her and you should be proud of what you are doing for her. I know the guilt, felt it when I had to approve taking mom off the vent, knowing there was only a 10% chance she could breathe on her own. I could have ordered extra steps, like my sister wanted us to do, but the doctors said this would be very painful for mom and most likely she would last no more than 2 weeks. All the doctors, moms pastor and her sisters agreed that she needed to be disconnected, but it still was the hardest thing I've ever done.

[markie]

63. damn

hang in there... please don't let the feelings of guilt get to you... I know you are doing the best you can!

it ain't easy... been there, done that

[littlemissmartypants]

64. Love you, Glam. ❤

Stay encouraged.

[Diamond_Dog]

65. I am so, so, sorry, Glam.

Is there anything more heartbreaking than to watch your loved one deteriorating in their mind?

Your mom is lucky in one respect and that’s because she has you and Mrs. G taking care of her. What do folks do who have this disease who don’t have family members to look out for them? Boggles my mind. I wish our lawmakers were more supportive of family caregiving, but that’s a whole other direction. Hillary was the only one who seemed to understand.

First and foremost, though, Don’t beat yourself up for feeling a relief that she may not last through this much longer! You’re NOT wishing for her to die. You’re wishing for a relief for her from a horrible disease from which there’s no cure.

When my mom had a plethora of health and mental problems at the end of her life, she eventually ended up on dialysis. She HATED it and made big trouble for all the staff and other patients at the dialysis center (screaming, fighting them, upsetting the other patients). Between all the other problems she had, and this on top of it, her life was one big misery. My sis and I decided we just couldn’t put her through it any more. Her doctors supported us in our decision to put her on palliative care. It was one of the hardest decisions I’ve ever faced, but I think we did the right thing. She lasted about a week, and then died in her sleep.

Don’t forget you have many of us here at DU who feel for your situation and I hope you can draw strength from that thought when times seem impossible.

Wishing all of you better times. ….

[cate94]

66. I'm sorry

Lewy body dementia is horrible.

[Loryn]

67. I am so sorry.

I understand your feelings of guilt. Tomorrow will be three years since my dad died from cancer. The prior seven were tending to his dementia. Three years ago today, as I was changing him, the paper diaper ripped. "Mofo" flew out of my mouth. I am not the kind of daughter that says this, certainly not in front of my dad. My mother had died three weeks before this, and I was exhausted.

I try to excuse it in my mind, and forgive myself. I still can't. It is a profound memory of my failure as a kind and patient daughter/caregiver. He was in no condition to form a judgment. I hope.

Be kind to yourself. It is a difficult journey.

[grantcart]

68. Sorry to hear, will be thinking of you.

[femmedem]

69. Your mom was probably talking about running a battery off a potato.

It's a real thing. She couldn't find the words, but she was telling a story that related to what you were talking about if Ukraine triggered a memory about potatoes.

https://www.smithsonianmag.com/innovation/a-potato-battery-can-light-up-a-room-for-over-a-month-180948260/#:~:text=A%20couple%20years%20ago%2C%20researchers,power%20of%20a%20raw%20one.

And I'm so sorry, Glam. It's so hard and so frustrating to lose our parents by degrees. My mom has advanced Alzheimer's and at this point I would be thrilled to have any nonsense conversation with her where she could string more than a word or two into a sentence. It's heartbreaking.

She loves music so on days when she can't talk at all and I think she is having trouble following what I'm saying, I ask if she would like to listen to some jazz, which was always her favorite. She always says yes. She also seems to follow what I'm saying best when I talk about things that happened when I was a kid, about the pets we had when I was growing up. She lights up when I tell her I love her and that I'm having a good life because she got me off to a good start. If your mom has old letters or cards she saved from her past, you could try reading those to her, too. My dad died a few years ago and for a while she didn't remember he had died but knew he wasn't there anymore. She worried that he was in the hospital or that he had left her. When I read love letters he'd written to her in the late 50s when he was on college break and missing her, she believed he was away but ok and missing her as much as she missed him. It gave her comfort.

I hope you can find a way to reach her, and as so many others have said, be kind to yourself when you are frustrated and overwhelmed and having conflicting emotions. Despite how hard it is, you are doing what's best for her. You're doing great.