When the caregiver has dementia.

Anxiety ,

I know , I didn’t listen to my DH either when I was in deep with my parents . He was very patient for a long time with me not being home , until I got really burned out .

DH knows what will happen , and he burned out with his Dad last year , which is why he’s trying to ignore his mother’s stubborness for now .

The best thing that could happen is for SO’s family to stop SO from being a servant . Then the house of cards falls and they both go to AL .

I get it way, you don't want your husband to go through all we go through, and worry about him getting burnt out.

As a wife I doubt I would of listened to my husband because then, when I was deep into caregiving I would think he was just being selfish, wanting all my attention, and annoyed because his meal wasn't on the table. Which in reality had nothing to do with his meal, but about the fact he saw that I was getting used by family. And he hated seeing me upset.

So I feel the partner can't say alot, only lead them in the right direction.

You are seeing what will more than likely happen and those around you don't so much, and it's frustrating as heck!

Beatty, thanks .

I will try. I want DH to tell her he will not rescue her . He says he doesn’t want to talk to her about it . He’s fed up with trying to get her to get POA , or hire help or go to AL . He hasn’t badgered her enough about it though .

So basically it’s wash, rinse , repeat . Sigh.

DH retreats , saw him do the same with FIL on and off . I was the heavy especially the first 18 months . DH is not forceful enough . Although DH finally did get better at it the last 6 months his Dad was alive . So I was hoping now ……… but NO . DH is not in the mood.

I don’t speak to MIL on the phone , never did , ( a boundary I set decades ago due to her interference ).

I will have to try more forcefully when I see MIL to get her to understand how things could play out . So far mentioning ward of the state has not moved her . Personally I don’t care . I’m just trying to save DH headaches . If I thought DH would really let her fend for herself , I wouldn’t worry about it .

Way. I have been trying to read my books but I miss the chats! (And the shared experience that hopefully helps us all).

It reads that your MIL is still the leader of her househouse, right?

Still making the decisions for herself - including a hopeful Florida holiday. A nice idea... Something to plan for... but maybe not realistic & much too burdonsome for her SO.

You could listen to her wishes & plans...? But - Talk to her about how to ADD safety to any possible trip:

. Ensure she & SO are deemed fit to fly by their Doctor
. Ensure family have the itinery
. Ensure they carry ID & NOK details
. Ensure medical POAs arranged befofehand.

A lot could happen between now & then. Just saying'..

IF they DO go, be prepared. Have a rough plan of what you will & won't do.
Eg will talk to medicos over the phone/video.
Won't fly down in person or escort them back.
Set up a plan you feel ok with.
Then you can 'let it go'.

That's what I do anyway.. the folks make their plans. I grimace a bit 😬 . Then ask if they can call to say when they get home safely etc. I pre-decided I won't be going anywhere to 'swoop in & save'.

Fawnby , yes the thought has occurred to me that this blood clot could do her in even before her planned end of year trip . She has had it quite awhile without it resolving . Now they have her wearing compression stocking because the swelling persists and the blood clot was still in her left leg .

She told DH it takes 45 minutes for SO to get the stocking on her and she cuts them off . She told DH her insurance pays for them so she cuts them off . I have no idea how often she’s doing this . I doubt it’s everyday.

If MIL insists on a plane trip with a blood clot in her leg, that may finish her off.

This is unrelated, but I know someone who recently had her foot amputated at the ankle due to a blood clot. The foot had no pulse. Blood couldn’t get through. Off it came.

Blood clots are bad.

What a mess! Waiting for the inevitable event that forces change is never fun. So sorry you even have to think about this

It does help to vent .

way. I see that dh has his head in the sand and can't cope with it right now. Yes it's frustrating when people won't deal with their issues and that negatively impacts family members, But you can't change them, you can only change yourself to deal with it so it doesn't impact you so much. Easier said than done I know, but worth working on, I think.

I expect you are right that dh will get involved. His way of coping right now is setting it aside. There is some merit in that.

Those of us who are planners and worriers get ourselves tied in knots before it even happens. Venting helps to a degree, I know it does for me. (((((hugs)))))

Golden,

I’ll try but the fact that DH has his head in the sand is worry . But there is nothing we can do , it’s so frustrating that MIL is going to leave a mess instead of having her ducks in a row, no POA , refusing to pay for care. And no matter what DH says now , I know he will get involved .

I would like to believe for DHs sake that he won’t get involved . Then I wouldn’t worry .. He’s hoping for the best but not prepared for the worst . He can’t prepare . MIL is uncooperative . I just know he’s not in the shape to take on a mess like that right now . And MIL refuses to see that DH has his own health problems.

((((way))) I am a proactive planner too, and it's hard to let go of that when the reactors are in charge. Realistically there is nothing you can do for so except worry about him which does him no good and does harm to you.. He has family which are not involved presently but surely will be when a crisis happens.

I think dh is very optimistic hoping that mil will go as quickly as she wishes, but I think many of us had that hope in a similar situation. Hope for the best, prepare for the worst...

I know it's hard to stand by and watch the slow collapse of a life style. Can you find something to distract yourself from these worries?

Golden .

No there is no plan. Which is part of my angst . I am a planner , preventer , proactive fixer by nature .

DH is trying to ignore this , partially for his own stress levels and partially because he says there is no point in worrying about it until it happens . Since we don’t know what will happen . He’s hoping for a quick sudden exit the way MIL wants, since she’s refusing to pay for help or go in AL , or assign POA. In the meantime everyone including MIL now ignores it all . That family never talked about anything uncomfortable to begin with .

However I do see the worry on SO’s face and feel bad . I fear poor SO will need rescuing . I’m Ok with letting selfish MIL fend for herself !

Oh, way. Such a trying situation And dangerous for mil and her so.

I am sorry that your dh is showing such signs of stress. He doesn't need an aging parent crisis. without POA, on top of everything else. I hope he sticks to his guns and doesn't rescue her when that inevitable disaster happens. Do you have a plan for how to respond? It's going to happen sooner or later.

It isn't a good situation, but there's not much you can do about it. Can you both "let go and let God" for now for your own sakes?

I feel bad for the SO . There comes a point in time when it’s abuse to have someone with dementia be a caregiver . At some point they can not make a rational decision about continuing to be a caregiver and may just keep following orders , by the person needing care , who does not want to hire homecare or go in AL .

It probably happens more often than we hear about because the person receiving care isn’t going to complain , because it works for them . Meanwhile the caregiver with dementia can’t always express their thoughts .

Sorry all , just have been needing to vent

I’m not in the middle . It’s not my circus really , but yes I see the disaster coming and angst over how it will effect DH .

DH doesn’t understand the angst. He says don’t worry about it , he’s not helping her . 🤔🤔🤔🤔🤨🤨🤨

I think that’s just his way of dealing with it for now . I know he would help . I suggested he tell her not to expect help when she’s traveling . He won’t do it , he said he’s not talking to her about it because it won’t change her mind . I still would tell her that but he avoids uncomfortable conversations with her .

Even though MIL and FIL divorced 35 years ago . They both have the same mantra , they don’t want their lifestyle to change, including imposing on someone to help them travel .

This is not fair for MIL to make SO with Alzheimer’s travel who has clearly expressed not feeling comfortable traveling any longer . MIL kept harping on a cruise , but SO did put a foot down and said NO . The past few years this Florida trip to see friends is all they have been doing . But last time we saw them SO was saying didn’t want to do anymore travel at all. MIL must have nagged , promised it would be the last time etc etc.

I do not see SO’s children stepping in to force any changes. So we are just waiting for the disaster that forces a change .

MIL should hire help or go to AL . SO is not well either any longer and will get worse . They do have a cleaning woman come in which she has had that service since before I met her 41 years ago .

They don’t cook anymore , they eat two meals a day . They eat an easy breakfast or sandwich . They go out for dinner 1/2 the days . They eat 1/2 and bring half home to reheat the next day .

The old folks here who travel generally have to give it up when they get any kind of health problem because they can't get adequate insurance, and nobody wants to end up in an American hospital without that. Of course there are always some fools who choose to live dangerously.

What a mess, Waytomisery, so sorry. And your stuck in the middle.

Seeing and knowing what is going to happen and have no power to change it.

Ya just gotta try to keep it out of your mind as much as you possible can.

Easier said then done!

MIL will drive to a small local airport that has a non stop flight to Florida where she has friends and a brother she visits . Brother brings her back and forth to the airport in Florida . They stay in a hotel the whole time and rely on others to take them out for a hot meal once a day or the grocery store . They have some snacks , sandwhich ingredients etc in the fridge and a microwave in the room . They eat the free breakfast at the hotel.

She gets the airport to push her in a wheelchair to the airplane . I’m assuming they will have to help her get out of the seat once it lands . ( When my DH went to Florida to move his Dad ( divorced from MIL) to live by us , the airline staff literally had to lift him out of the seat , he could not stand up in such a cramped space . I didn’t realize they would lift anyone out of a seat , but they did ).

I alerted DMV about our concerns about her mobility issues and being able to drive safely , but I think it went nowhere because they asked for specific dates , locations, and examples of unsafe driving which I could not provide . We live a 4 hours drive away from her , we don’t see her drive . However, her sister said her driving is bad , but to be honest it always was .

I’m angry , because I know if something happens while she’s in Florida she will 100% ask DH to fly down there because he did it to move his father up by us . She won’t see the distinction between bringing a man with dementia up by us to live in AL , and rescuing someone doing a pleasure trip they should not be doing.

Although DH says she’s on her own . He says he’s not rescuing her . He says he’s not POA , she won’t get her things in order , so he’s not helping her . But how often we all say that and then help anyway .

Other people have it so much worse. We aren’t helping her at all . I feel bad for complaining . Uggh , but DH is very stressed out over work right now , he looks haggard , he also has some health issues going on , he’s tired , on edge , grouchy . I don’t want him to have to deal with rescuing her from a trip . He doesn’t look good , I’m worried about him. DH is also not over the stress of dealing with his difficult Dad ( who died this past January ) .

MILs SO’s 2 adult children could care less because MIL drives SO everywhere they need to go , so they don’t have to worry about taking care of their parent’s doctor appts etc .

MIL may or may not have some dementia going on. Hard to say if she is just stubborn denial or is not realizing her decline . But at 87 , it’s possible she’s got some dementia or even 02 deficit from anemia from CLL. Her color is awful . She’s lost 50 lbs . I don’t see traveling going well. She doesn’t answer my questions at all about what the oncologist says , or if she’s on any medications for it .

They admit they have younger retired friends in their condo who drive the older ones for a fee , but MIL is not willing to stop driving. MIL expresses she wants to keep living how she has been , no facility , just wants to die before a facility is needed. For my DH’s sake I hope she gets her wish.

If MIL didn’t have her SO as her servant , she would definately have to hire help to come in or go to AL. So this bothers me as well. She’s being selfish having SO with cancer , Alzheimer’s , and very high BP be her caregiver . Which like CWillie said is probably common , but then travel just is over the top . SO has expressed not wanting to travel anymore . MIL , is a nag until she gets her way .

My FIL was similar , wanted us to take him on a cruise , dragging wheelchair , walker , a case of Depends etc .

It’s not fair to ask someone to do that , IMO . There comes a time when you just can’t travel . Next time I see MIL , I’m going to ask her what her plan is if something happens and she’s far away from home . I hope DH tells her he’s not going to rescue her from a trip .

I think this is a common dynamic in a lot of households, it's kind of like two half people combine their resources to make a whole, somewhat functional, one. The issue of course is your stubborn MIL who wants to keep on living the life she's accustomed to - when that goes well we all stand up and applaud a person's pluck and determination to live life to the fullest (90 year old goes skydiving, how amazing!...). But of course you have to wonder what their families really think, there are no doubt a lot of spectacular failures that never make the news.

Way, how is your MIL getting to the airport? Who is helping her to her seat on the plane?

If she is an unsafe driver you could try reporting her to her state's Dept of Public Safety. That's who recently cancelled my Mom's license here in MN. In FL I reported my one Aunt anonymously online to the DMV website.

My 105-yr old Aunt in FL has her 75-yr old niece (my cousin) as one of her caregivers. It's become apparent that my cousin now is experiencing short-term memory issues (she even admits it). I've talked to her husband about it (since I'm Auntie's PoA I've made sure he knows they are in no way obligated to continue doing any caregiving) and also am in contact with my cousin's adult daughter so I can know that what I'm seeing in my cousin is accurate since she is in FL with my Aunt and I'm in MN and the daughter is in NJ. Literal triangulation.

Fortunately my other cousin who is providing paid care is 58 and is still managing well, but has an impaired dominant arm from an accident. She recently went to the ER for "passing out" at home. I have no reason to suspect she's an alcoholic but she certainly could be a diabetic in denial or have other health issues.

So, my 105-yr old Aunt often seems like the "healthiest" one of the bunch. I'm working on a back-up plan for my forgetful cousin's eventual exit.

So sorry way, what a mess.

Was just reading you're story, thinking , does anyone have it easier, but we wouldnt be here if life was easy

As for your mils, SO, my dad was horrible to my mom, then I realized that's what Mom wanted, that's all she new and no matter how mean my dad was, she would of died for that man. And no one would of been able to tell her otherwise. So I just let that go. That was her happy place. Maybe that's your SOs happy place .

Being treated poorly by my father was her happy place. Then she pics my brother to have all the power , who is exactly like my dad. Which writing this to you is really helping me, see some AHAaa moments, in my own world. So thanks!

As for the trip, try not to worry, it may very likely never happen.