Parents caring for the parent support thread (Part 1)

Hmm self centered with a tendency to misogyny and narcissism. Passive mother who lacks confidence and won’t go anywhere alone due to co-dependency and lack of confidence? You could be my SIL talking before about 6 years ago!

When I mentioned dealing with mom’s packing, I meant after I dropped her off after having lunch with us, and came back 20 minutes later with her mother’s day gift that didn’t make it the first time, she had all her clothes outside the closet on on the bed as she was “going home.” This isn’t unusual behavior for her, but as far as I know, she hasn’t done it for a period of time. But, I understand, I brought her to my house which she vaguely recognizes, to have lunch with 3 people (me, DH, and DD) she vaguely recognizes and not allowing the one person she most connects with (what’s his name) to come over and she is searching for something familiar to make sense. I get this going home (really an abstract concept as she doesn’t know where this home is) not because your unhappy necessarily, but as a search for someplace familiar where you belong in this world. So heartbreaking to be so frightened.

@GTalum - I am so sorry. That must be so hard. Hugs.

“Home” to dementia is often the home they grew up in, deeply rooted in long term memory.

My step-daughter told us the same thing about “home”, so my daughter asked Mom where ‘home’ was. Mom answered with no hesitation and described her apartment in this house. Where Pam is. So, unfortunately, she knew exactly where she wanted to go.

My mom is unable to articulate where “home” is.

My relative is in hospital. He gets agitated and confused but is adamant he wants EVERYTHING done. He was pulled out heart monitor and pulled off O2 mask so needed restraints and got more agitated. He needs supervision to eat or drink anything so he doesn’t aspirate again as he has pneumonia (possibly from aspirating).

He needs a family member there to keep him calmer plus they gave him an iv sedative. He had OT assessment but said he doesn’t need and won’t do after it was recommended. I’m 2500 miles away, just finished seeing my MD and going to a conference tomorrow in another nearby city.

They are taking turns caring for his spouse. It’s very challenging and likely to get MUCH more so.

Found out last night that Meals on Wheels stopped delivering to MIL two weeks ago! Why nobody thought to call us before they ran out of food is beyond me and by nobody I mean my SIL who lives in the same house with MIL, or MIL herself, who is completely mentally competent. H has to handle it because they haven’t given me POA yet to call these agencies and entities on her behalf. He probably didn’t fill out a renewal form. D had Chinese food delivered to her last night, the middle boys dropped some stuff off today. H and I will go to Costco this weekend and stock her up till MOW gets reinstated. I just can’t deal anymore.

That’s crazy @techmom99!

I am not sure if I am just venting or actually asking for input here. My mother went to visit my sister for 6 weeks when DH & I had to do some work travel stuff. Everything went well, but since she’s been back, it’s been really rough. She has had a condition for over 20 years where, in a nutshell, if she overdoes it, she is in bed for a week. She’s been home for a month, but has overdone several times, but the overdoing is such tiny things, like a walk to the end of the block and back or a drive to get an ice cream gone, etc. We’ve repeatedly started over with her ‘recovery’ from her travels. I’ve decided she’s not going anywhere or doing anything for several weeks!

This week she is really bad, most of the days in bed, getting weaker and weaker (she’s 92) and now I am even helping her to the bathroom (she is normally fully capable of doing her ADLs.) This is frustrating because she cannot afford to lose that strength. I need to get her up to do more, and yet she has to rest to get her dizzyness to go away.

The worst part, for me, is that she is having these weird vivid dreams that feel so real and are so confusing. She has dreamed that she visited some old folks homes, presentations, brochures, etc. She’s telling me all the reasons why they won’t work (but we’ve neither gone to visit homes, nor even discussed it!) Last night she awakened me at 3AM, clearly not realizing it was 3AM and clearly upset that no one was up & around. She’s not taking any meds that lead to dreams, but darn, I wish I could get them to stop for her.

(((((hugs))))), @somemom. I found that for my stepmother, it was definitely two steps back and barely one step forward whenever she spent time away from home. It’s so hard, knowing that in the long term, there’s only direction now for your mom.

Re the dreams: it sounds like she’s preparing herself for the inevitable changes that will come up soon.

I hope she regains her strength somewhat so you and she together can make a plan. You are such a good daughter!

@somemom In case you were looking for input. Dehydrated? Blood pressure ok? GI bleed? Anemic?

In any case, you are providing her stable base home, and she is readjusting and feeling secure again.

I don’t mean to alarm, but I remember how much this info helped us, when MIL was in steep decline. We probably had it linked some time ago, but good to keep in mind. It doesn’t replace medical attention, as needed.
https://www.webmd.com/palliative-care/journeys-end-active-dying

Thanks for the ideas everyone.

@lookingforward my sister and I keep talking about how to know if she is moving toward dying (you would not have said that last weekend) or if she is merely experiencing her usual weakness when she overdoes (she’s been nearly this bad before at much younger ages.)

Over the years,I did a lot of care for my MIL who had had a serious stroke & my mother this week is definitely reminding me of MIL, with her inability to be mindful in what she does, like trying to sit down and missing the chair, grabbing the arm of the chair to help sit and ending up sitting at the far side of that chair. Watching her climb into bed (She is tiny and has a tall bed) seeing how unintuitively she moves, getting her arm trapped etc. The comparison to my MIL is really helpful in causing me to not expect Mom to make any good decisions at all, not to expect her to be sensible about the most basic things.

@oldmom, if this is her new normal, then yes, these are predictive dreams as she would need more care than we can give at home. Hopefully she is able to get back to where she was last weekend, able to do her own ADLs, and to where she’s been the last month in terms of strength and ability and then avoid this sort of decline. I am thinking she never travels again:( I’m currently planning and hoping that she is exhausted from her travels and that it will take her a long long time to get back to ‘normal’ and we will judge normal then and deal with it.

How to Age Well and Stay in Your Home
Don’t wait for a crisis like a broken hip to modify your home.
https://www.nytimes.com/2018/05/21/well/how-to-age-well-and-stay-in-your-home.html

@surfcity It is exhausting when hearing aids don’t work or in the case of grandmother, she won’t wear them. The constant talking over and interrupting conversations are maddening!

@partyof5 Welcome to my life. My dad has them and won’t wear them, and my live-in mother needs them and won’t get them! Huh? Huh? What?

@NerdMom88 We begged my grandma to get them, a nice pair, that sits on a charger so she wouldn’t have to fool with batteries that have to be replaced frequently. She wouldn’t get them and now complains she needs batteries or can’t hear so she doesn’t wear them.

I feel for you all who have parents with hearing issues. My mother NEEDS hearing aids, WEARS them in both ears and STILL can’t hear. It’s awful both for her and for us. They help her to hear sound but she can’t distinguish words. So frustrating!

My mother got to the point that she didn’t remember how to place the little thing into her ear (the main part was behind her ear), so it just rode around in her hair somewhere. She never remembered to change the battery, and didn’t break the battery out at night, so I’d have to remember her battery. Then one got lost, and the replacement wound up in the washing machine somehow. I just didn’t replace that one, although I was getting ready to when she fell and broke her arm. I saw a resident at the facility Mom was in break her hearing aid in half, because she had no idea what it was. They had a thing that looked like headphones with a batter pack hanging down her back that she wore sometimes (the resident who broke her hearing aid); I guess they had several that residents could ask for.

Hi all - just saw this thread, and approaching my wits end. Sorry for the long intro: First, I’m an only child. Parents divorced when I was 11. Mom, 73, moved 3 hours away with husband #3 about 12 years ago. She went from living in a suburban area with plenty to do, friends, etc. to an area where they are isolated.

Husband #3 is an alcoholic, at the very least I suspect mentally abusive and just overall not a nice person. He came with no savings, no retirement, no pension. My belief, and a close family friend’s as well, is that he has manipulated her to buy not one, but 2 houses, all sorts of toys for him, etc. He lived a lovely life while she worked like a dog. And, she’s allowed it to happen. For a variety of reasons, I haven’t seen my mom since August 2011. She hasn’t seen her only grandchild in that amount of time as well.

She has had several medical emergencies: brain aneurysm in 2010, subdural hematoma in 2010…she’s like a cat with many lives - lol. My involvement with her care during the brain aneurysm/subdural hematoma and sharing the “dirty little secret” of #3’s drinking with medical professionals during her recovery (because I didn’t think she should be released to the house) caused me to be written out of all medical decisions, written out of all care, and beneficiary, etc. #3 was key in that. It was a nasty time. I’m only given access to her doctors if she verbally tells them it’s ok because I’m not on any paperwork/directives. I talk w/ her every day and do love her, but she won’t let me “in”. The main reason for the estrangement is because she always sides with #3.

About a year and a half ago, she drove 75 miles away from her home to another state before she realized she was lost. After an expensive cab ride to the hospital, the doctor diagnosed a UTI. #3 was half in the bag and couldn’t assist. At that time I demanded him to have his name removed from all medical decisions, and mine on seeing I’m the only lucid person in her life. My mother acquiesced, but only “if he was unable to make the decision”. Super dee duper. That’s wonderful…and really useless. #3 is durable POA and beneficiary to all things.

3 fell a couple of weeks ago, getting an unknown amount of stitches in his hand (I never get the full story on anything). It became apparent that I needed to see her. It's an unpleasant house, to say the least. I went up yesterday and met her in a neutral restaurant. At 73, this once beautiful, vibrant, articulate and funny woman looks haggard, disheveled and 85 (and not a good 85...). It's heartbreaking.

The long and short is that yesterday, on my way home (the total opposite way she should have been going home), she was following me. I pulled over, approached her car and asked her where she was going. She said she was following me back to the town we met in (I was heading out of that town). She was completely lost, scared, didn’t know how to get back to her home. It broke my heart…and angered me that no one is addressing the things that I even see over the phone…her friends think “she’s fine”. Everyone has told me my suspicions are naught. My maternal grandmother passed from Alzheimer’s in 1994. I remember it well. I remember the signs and signals well. This, to me, is a huge flag. There were other flags yesterday, but this was the biggest.

I’ve addressed the possible dementia issue before - with her 2 friends and with #3: ie: she cries over things she has no emotional attachment to - news stories, for example, which while sad, wouldn’t cause me to cry, she’s been thinking it’s June for the past several days and there are other things that happen regularly. I’ve also addressed the fact that she may be depressed.

I’ve encouraged them to look to the nearest “metropolis” -using that term loosely - to see if there’s an assisted living facility there. There is. She would move, he wants no part of it. So, they stay. I’m always told that I “want nothing more than to put her in a home”. I can’t think of anyone who wants that for a parent, but whatever. I’ve also encouraged her to leave him…as you can imagine, that will never happen. Let’s remember that I have limited access to her…she has effectively shut me out.

So, this begs the following questions: 1) Is the getting lost/confused a red flag that something greater is going on? 2) How the heck do I proceed when they live so far away and she is obstinate and unwilling to let me help her…and in what I believe is an abusive relationship? 3) I want to be clear that I want no part in handling anything for #3. He has a child with whom he has been estranged for 35 years (shocking). My sole purpose is to give my mom the dignity she rightly deserves.

Thanks for letting me vent…any suggestions are warmly welcomed.

My mom started getting lost when she was already in the mid stages of Alzheimer’s. She did a good job of fooling us all. When I finally got her to a neurologist, he told me that we should have taken her car keys away years ago and that she was a danger to herself and others. It’s difficult enough to intervene when the personal is open to help, I an’t imagine having to try to advocate while in your situation.

My advice would be to reach out to the Alzheimer’s association to ask for their advice. They were super helpful to me when my mom was declining.

Good luck to you. You are in a tough spot :frowning: