A Thread for Those Caring for Aging Parents etc.

[missy]

Hey there! Just a quick update. Got a very nice call from Aunt J today. She just wanted to talk. No complaints, not at all. A little later, I heard from SIL, that she, too, had a call and it was completely positive! Aunt J has been all but nasty to SIL lately. Definitely rude, refusing to speak to SIL, demanding to speak to my brother, instead Really, I think that's because SIL is a direct person, who answers her honestly, meaning doesn't give Aunt J the answers she wants. Not that B and I do, but we are "family" so she doesn't hold the grudge the same way. Fingers crossed that this means she is feeling well and the Zoloft is really taking effect!

Wonderful news KaeKae! So happy for you and your family. All your hard work and love is paying off. Continued good wishes and hugs.

 

[KaeKae]

Thank you, missy!

 

[Arkteia]

I should write about my dad - he is an Russia, and I am the only child - but I can't even start. Just wanted to say that I sympathize with all of you, and thank you for starting this thread.

 

[KaeKae]

Arkteia, any time you do want to talk, the ladies here are a wonderful support.

I saw Aunt J yesterday. She's doing so well, both physically and mentally. Unfortunately, she realized yesterday (actually woke in the middle of the night to the memory) that she had missed her friend's memorial mass. (It was the day after she came down with the flu, that turned into pneumonia and put her in the hospital.)

She feels bad, even though she knows that she couldn't help it and her friend's daughter totally understands. She also doesn't remember any of it, from coming down with the flu, through recovery to just a week or so ago. So, she doesn't remember speaking with the daughter after, either. It probably better not to remember how sick she was and all the anxiety that came from it, but frustrating for her.

 

[Calliecake]

I spoke to an aunt yesterday who I haven’t seen in a few years but we speak on the phone about six times a year. She lives in another state. She told me yesterday that she knew that she loved me but wanted to know if we had ever met in person. When I told her about the last time we were together she asked if I was sure it was her I had visited. It’s hard watching your parents and family members age.

 

[junebug17]

I spoke to an aunt yesterday who I haven’t seen in a few years but we speak on the phone about six times a year. She lives in another state. She told me yesterday that she knew that she loved me but wanted to know if we had ever met in person. When I told her about the last time we were together she asked if I was sure it was her I had visited. It’s hard watching your parents and family members age.

I know @Calliecake, it really is sad to see relatives age. I'm sorry your aunt seems to be declining, (((hugs)))

 

[missy]

@KaeKae and @Calliecake keeping you and your aunts in my thoughts. So sorry you are dealing with this...but they are lucky to have you. It is challenging dealing with loved ones getting older. ((Hugs)).

 

[KaeKae]

Thank you, @missy

I spoke to an aunt yesterday who I haven’t seen in a few years but we speak on the phone about six times a year. She lives in another state. She told me yesterday that she knew that she loved me but wanted to know if we had ever met in person. When I told her about the last time we were together she asked if I was sure it was her I had visited. It’s hard watching your parents and family members age.

@Calliecake it really is hard. We've had similar conversations. I just try to be reassuring, though I never know if it helps, my brother thinks it does.

 

[junebug17]

Thank you, @missy



@Calliecake it really is hard. We've had similar conversations. I just try to be reassuring, though I never know if it helps, my brother thinks it does.

KaeKae, I agree, I tried to be reassuring and never made a big deal out of my mother not remembering something. Other family members would argue with her and keep saying "you don't remember that?" and it was pretty unproductive, because badgering her wasnt' going to improve her memory. It really bothered me and I would call them on it when they did it.

I'm so glad your aunt is doing well!

 

[Calliecake]

@KaeKae , I’m with your brother and also thinks it helps a great deal. Your aunt is lucky she has you. I’ve been through this with another family member who had Alzheimer’s. Near the end one of his nurses said she thought he knew me. I don’t think that was true but I do think he knew I was kind to him.

Being reassuring, gentle and kind is the only way someone should be treated with this disease. I’m glad your mom had you taking care of her @junebug17 .

 

[Maja]

I'm back here to remind myself of what I learned here: take it day by day, hour by hour, minute by minute. My dad is 84yo with a history of TIAs and also an actual stroke, these left him with memory issues, mobility issues, trouble swallowing, among other things. He and my mom aren't about to leave their house, and it was clear they couldn't make it without help, so DH and I upped sticks and moved in with them this summer, it was work, work, work for a few months to get a routine set up, deal with the causes of his falls etc, y'all know what that is like.
Some ER visits, some hospital stays, thought we had turned the corner and were seeing some sustained improvement in his strength and endurance, weight gain, similar, had a party for St Patrick's Day on March 17 with about 40 friends and neighbors, and he LOVED that, and, well, it's always down after up, right? He got out of bed early last Monday morning and came downstairs to the kitchen to make a sandwich, and no one heard him. No one. He fell, and my mother woke up and came looking, found him on the floor of the kitchen, covered in blood but he was conscious. Possible concussion, so he was transported to ER, got stitches, X-rays, similar, then "admitted for observation" which is different from being admitted to the hospital, but I don't know exactly how, sorry, was released to a nursing care unit at a rehabilitation facility close to our home (if you ever have to do this for a loved one, be prepared to make a LOT of phone calls, and it helps to have some cash money to front, even if insurance will pay in the end), and yesterday went from the rehabilitation facility to the ER at the local hospital, X-rays showed aspiration pneumonia, so he was admitted to that hospital.
We caught the pneumonia early, and he will be released in a day or two, and the good news is he is coming home, not going back to the rehabilitation unit, and I'm positive he will recover faster and more completely when he is at home.
My mom ordered a hospital bed, it's arriving later this afternoon, and my daughter and my sister cleaned out the family room on the ground floor and the hospital bed will go in there. It's just a few steps from a powder room, and from the kitchen in the other direction, so he will be in the center of things, which he likes. He will also be able to look out the large windows fronting on the street, and see the arrivals, deliveries, dog walkers, etc. We have to get night nurses now, to watch him at night so he doesn't get out of bed and fall again.
The doctor says with antibiotics my dad will be much improved by Friday, but will have to be carefully watched and cared for another six-eight weeks until the pneumonia is gone.
It'll be a long road back, and even then, he won't be taking those cruises or vacations or car trips or anything like we all used to do.
I feel a bit detached, which might seem heartless. On the other hand, my mom was detached to the point of neglect until a few days ago, my sister is emotional and volatile when she visits, one brother is sending us all texts saying basically "You're doing it wrong, read this", and the other brother is buried in work, but his wife calls my mom and complains they are being left out, which upsets my mother. I tell myself, just watch the patient and make sure he is safe, warm, hydrated, fed, entertained in that order. I also remind myself I wasn't the favorite child before this, and me stepping in like this won't make the favorite, so don't get caught up in the drama.
I'm not working, so I have plenty of time to process this, but I think my mom needs a support group. I'm not recommending you guys, because I'm selfishly keeping this space for myself.

 

[Maja]

I read all your posts and it helps so much to know what other caregivers are going through. I also get a sense of what the aging person is going through, and it looks brutal. I'm not there yet LOL!! I'm lucky my parents have good insurance, and a social network, not just family. It means the tasks are spread out among different people, but I know several women who shoulder it all. One classmate spends Monday evening through Friday morning with her 90yo mother. Since the mother has dementia, she can't be left alone, so the other daughter does the care between Fridays and Sundays. On weekends, M~ does the mom thing with her son, who spends the rest of /his/ time at his dad's home. In her spare time she cans and quilts, JOKE! She's exhausted, of course. Well, there it is. Bye to all (again!) Maja

 

[CJ2008]

KaeKae, I agree, I tried to be reassuring and never made a big deal out of my mother not remembering something. Other family members would argue with her and keep saying "you don't remember that?" and it was pretty unproductive, because badgering her wasnt' going to improve her memory. It really bothered me and I would call them on it when they did it.

Such an important reminder / tip. Badgering someone certainly would not bring their memory back, on the contrary, it would probably create anxiety, and I know for me, when I get anxious my mind goes BLANK and I can't think at all. It's like the anxiety takes over and there is a blank space. So imagine that coupled with actual memory problems.

Maja and kaekae and everyone else my thoughts are with you as you go through these very difficult and taxing times.

 

[denverappraiser]

My mother’s memory is slipping badly. She forgets things as basic as who her grandchildren are and that it’s helpful for reasons of gait for your shoes to match.

There are drugs for this, but everyone I talk to says they’re both ineffective and have nasty side effects. Her doctor is discouraging it. Does anyone here have experience with this?

 

[tyty333]

I read all your posts and it helps so much to know what other caregivers are going through. I also get a sense of what the aging person is going through, and it looks brutal. I'm not there yet LOL!! I'm lucky my parents have good insurance, and a social network, not just family. It means the tasks are spread out among different people, but I know several women who shoulder it all. One classmate spends Monday evening through Friday morning with her 90yo mother. Since the mother has dementia, she can't be left alone, so the other daughter does the care between Fridays and Sundays. On weekends, M~ does the mom thing with her son, who spends the rest of /his/ time at his dad's home. In her spare time she cans and quilts, JOKE! She's exhausted, of course. Well, there it is. Bye to all (again!) Maja

Maja...so sorry things have not been going smoothly with your Dad. It does sound like you have your priorities in order and I'm sure your mom is really
thankful for your help...as always, dont forget to take care of yourself. As for other people trying to give advice when they're not there...just shake your
head yes...do a little research about what they say and drop it if its not helpful. People want to be helpful but if they are not there daily then they dont
get the whole picture.

Sad story...when my parents were looking after my Dad's mom, one of his brothers said that he couldnt come visit her because she use to be his hero
but now that she had declined and needed support he just didnt want to see her that way. That thinking just made my parents sick (me too)...my parents
made the call to not even tell him when she passed away. If he couldnt stand to come visit her while she was alive what good would it do for him to come
to her funeral??? Sickening!

 

[perry]

My mother’s memory is slipping badly. She forgets things as basic as who her grandchildren are and that it’s helpful for reasons of gait for your shoes to match.

There are drugs for this, but everyone I talk to says they’re both ineffective and have nasty side effects. Her doctor is discouraging it. Does anyone here have experience with this?

Yes: I'm the caretaker for my mother. In the last 6 months she has gone from being able to handle most bills in the mail complete confusion on finances; and loss of ability to track and do many things. I have now taken over all financial matters with the single exception that my mother still takes the checkbook down to the Senior Center office each month to pay her rent (portion). The office fills out the check, and she signs it. I have it all set up for the day she can't do that anymore (I doubt it's far away).

My mom also cannot remember many things, and constantly asks the same questions about finances and how the checking account works - even when explained to her minutes before (this is a conversation every time we talk).

She does remember what day it is, and her daily routine... She is managing in her apartment with cleaning, bathing assistance, meal delivery services, nurse visits, etc. It's a juggle to manage all of it from my end (I live about 3 hours away. Today I visited and took her to a Dr. Apt. Left the house at 10 AM, home about midnight. I typically visit in person weekly. On the phone a lot with her and her care team (emails, etc.).

As for the memory drugs. I cannot recommend them unless there is evidence that there is a real match for effectiveness. I understand that there is functionally 3 basic memory loss reasons - and that the drugs only work sometimes for one of those reasons (and are totally ineffective for the other 2).

For the last 1.5 years I have been taking my mother to a memory specialist every 6 months (todays appointment was one of those) after the memory problems started (initially small things) and she had a several hour memory/brain function evaluation initially: she will not develop Alzheimer - but one of the other causes is dominant - and well understood. All we can do is watch and care for her.

I feel very much for you; and while there is a lot to be said about my struggles and my mom's conditions - and how I am coping.... I have accepted that I'm the one who is blessed to have taken responsibility of the 8 children.

It takes someone with true compassion to be able to do this kind of care.

I wish all of you the best who are doing this,

Perry

 

[missy]

I tried to be reassuring and never made a big deal out of my mother not remembering something. Other family members would argue with her and keep saying "you don't remember that?" and it was pretty unproductive, because badgering her wasnt' going to improve her memory. It really bothered me and I would call them on it when they did it.

Such an important reminder / tip. Badgering someone certainly would not bring their memory back, on the contrary, it would probably create anxiety, and I know for me, when I get anxious my mind goes BLANK and I can't think at all. It's like the anxiety takes over and there is a blank space. So imagine that coupled with actual memory problems.

Gosh that is so true @junebug17 and @CJ2008. Thank you for the important reminder. Badgering anyone will stress them out and not be helpful in any way.

I'm back here to remind myself of what I learned here: take it day by day, hour by hour, minute by minute.

@Maja so sorry it is such a challenging period and sending you good thoughts and hugs. This sentence you wrote is everything. Remember when things are overwhelming just break it up into one day at a time and one hour at a time and if that is too tough still one minute at a time. You got this. (((Hugs))).

 

[missy]

Maja...so sorry things have not been going smoothly with your Dad. It does sound like you have your priorities in order and I'm sure your mom is really
thankful for your help...as always, dont forget to take care of yourself. As for other people trying to give advice when they're not there...just shake your
head yes...do a little research about what they say and drop it if its not helpful. People want to be helpful but if they are not there daily then they dont
get the whole picture.

Sad story...when my parents were looking after my Dad's mom, one of his brothers said that he couldnt come visit her because she use to be his hero
but now that she had declined and needed support he just didnt want to see her that way. That thinking just made my parents sick (me too)...my parents
made the call to not even tell him when she passed away. If he couldnt stand to come visit her while she was alive what good would it do for him to come
to her funeral??? Sickening!

Gosh that is awful @tyty333. I am so sorry. It really goes to show you that people can and often are *so* selfish. And I firmly believe that true character comes out in times of stress and money issues too (going back to another thread now re the money and the wills). Heartbreaking.

 

[missy]

My mother’s memory is slipping badly. She forgets things as basic as who her grandchildren are and that it’s helpful for reasons of gait for your shoes to match.

There are drugs for this, but everyone I talk to says they’re both ineffective and have nasty side effects. Her doctor is discouraging it. Does anyone here have experience with this?

So sorry you are all going through this. It is awful when memory goes. My question for you is what meds is she already on? There are a list of medications that can cause or exacerbate memory loss. Something to be aware of. Having said that there is new research coming out all the time about possible meds that might help with this issue. Here's some info.

https://www.alz.org/alzheimers_disease_standard_prescriptions.asp

https://www.webmd.com/brain/memory-loss#1

 

[missy]

Yes: I'm the caretaker for my mother. In the last 6 months she has gone from being able to handle most bills in the mail complete confusion on finances; and loss of ability to track and do many things. I have now taken over all financial matters with the single exception that my mother still takes the checkbook down to the Senior Center office each month to pay her rent (portion). The office fills out the check, and she signs it. I have it all set up for the day she can't do that anymore (I doubt it's far away).

My mom also cannot remember many things, and constantly asks the same questions about finances and how the checking account works - even when explained to her minutes before (this is a conversation every time we talk).

She does remember what day it is, and her daily routine... She is managing in her apartment with cleaning, bathing assistance, meal delivery services, nurse visits, etc. It's a juggle to manage all of it from my end (I live about 3 hours away. Today I visited and took her to a Dr. Apt. Left the house at 10 AM, home about midnight. I typically visit in person weekly. On the phone a lot with her and her care team (emails, etc.).

As for the memory drugs. I cannot recommend them unless there is evidence that there is a real match for effectiveness. I understand that there is functionally 3 basic memory loss reasons - and that the drugs only work sometimes for one of those reasons (and are totally ineffective for the other 2).

For the last 1.5 years I have been taking my mother to a memory specialist every 6 months (todays appointment was one of those) after the memory problems started (initially small things) and she had a several hour memory/brain function evaluation initially: she will not develop Alzheimer - but one of the other causes is dominant - and well understood. All we can do is watch and care for her.

I feel very much for you; and while there is a lot to be said about my struggles and my mom's conditions - and how I am coping.... I have accepted that I'm the one who is blessed to have taken responsibility of the 8 children.

It takes someone with true compassion to be able to do this kind of care.

I wish all of you the best who are doing this,

Perry

Hi Perry, I am sorry about your mom and you are taking such good care of her. Sending you good wishes. Nice to see you here again.

 

[Lorelei]

I cared for my very elderly Mother for the past few years of her life, she's passed now and that took much of my time in the past 4 years or so as she really declined. But she was never great for the past 10 years, she had falls and fractures plus her many other maladies and she was very challenging to deal with both physically and mentally although her faculties were as sharp as ever.

It took most of my free time and energy to take care of her, which I gave willingly, it's a hard road though.

Those that do it are wonderful, it has its memorable and priceless moments along with the sadness and frustration and all the other feelings in between.

 

[missy]

I cared for my very elderly Mother for the past few years of her life, she's passed now and that took much of my time in the past 4 years or so as she really declined. But she was never great for the past 10 years, she had falls and fractures plus her many other maladies and she was very challenging to deal with both physically and mentally although her faculties were as sharp as ever.

It took most of my free time and energy to take care of her, which I gave willingly, it's a hard road though.

Those that do it are wonderful, it has it's memorable and priceless moments along with the sadness and frustration and all the other feelings in between.

I’m sorry for your loss Lorelei. Thankful you had that time with your mother to take loving good care of her despite the challenges. Knowing you gave her your all when it really mattered. Hugs.

 

[Lorelei]

I’m sorry for your loss Lorelei. Thankful you had that time with your mom to take loving good care of your her despite the challenges. Knowing you gave her your all when it really mattered. Hugs.

Thanks Missy. <3

It was one of the hardest things I ever did and it didn't leave me with much time or energy for myself after I'd been caring for her, Hubby and the animals but now it's time for me, knowing I did my best. She was neither easy nor grateful at times, she was like that throughout her life and her age and illnesses exacerbated the worst sides of her as they can with us all.

 

[perry]

Hi Perry, I am sorry about your mom and you are taking such good care of her. Sending you good wishes. Nice to see you here again.

Thanks Missy: Please do not feel sorry for my mom. Neither she nor I do. She has lived a full life and is making the best of what she can do. Generally has a positive attitude... She is very aware of the process and the eventual outcome.

For decades she volunteered in the local "Save Our Seniors" (SOS) Charity. Among other things that charity offers a special insurance program of reduced charge or Free services at local hospitals and clinics, which my mother actually helped set up (things medicare does not cover). A major local "Non-Profit": Hospital some years ago were up for a major licensing as a charity hospital; and they were asked what were they doing as a charity for the community.... There was the established "SOS" health program struggling for funding each year... and their answer was "We are now funding the SOS health program" as part of their licensing application. It's a lot easier to fund and help direct an established program than to develop one from scratch. SOS determines eligibility - the hospital has not changed that at all; they did ask that most patients be directed to them and their clinics when possible.

Earlier this year when I took the renewal paperwork over to the SOS office... they waived their normal fee based on her years of service and helping set that program up. I was told that she would be "free" forever based on her contributions to the organization.

While I personally struggle at times - and my mom does have bad days - It's all worth it in the end.

Have a great weekend. I'm off on a trip and will not likely have time to check this site for at least several days.

Perry

 

[missy]

@perry please do not misunderstand. I do not feel sorry *for* your mom or you but I am sorry she is going through challenging times. It is always sad when we see our loved ones struggle with health issues and getting older no matter how rich and wonderful their lives are. Good for her for all she does and did. Have a safe trip and enjoy.

 

[KaeKae]

Hi everyone, I thought I'd just stop in to say hi. I hope you all are doing well with your respective family members. My aunt is doing very well, it's hard to believe she was so sick two months ago. Last week, as I was arriving for a visit, the unit nurse stopped me to say hi and said the same thing. "She's back, all but 100%!" I guess she doesn't want to say 100%, because I could try to hold her to it.

Now that I hear that Influenza B is on the rise, I'm just praying that it stays clear of my aunt's place. I DON'T want to revisit that experience, not ever again.

Now I have to go back and get caught up on what you all have been doing. Hugs!

 

[missy]

Hi everyone, I thought I'd just stop in to say hi. I hope you all are doing well with your respective family members. My aunt is doing very well, it's hard to believe she was so sick two months ago. Last week, as I was arriving for a visit, the unit nurse stopped me to say hi and said the same thing. "She's back, all but 100%!" I guess she doesn't want to say 100%, because I could try to hold her to it.

Now that I hear that Influenza B is on the rise, I'm just praying that it stays clear of my aunt's place. I DON'T want to revisit that experience, not ever again.

Now I have to go back and get caught up on what you all have been doing. Hugs!

KaeKae thank you for your and your aunt's happy update. Appreciate you sharing this good news more than you can know.

And I hope your aunt stays healthy and that the influenza bug doesn't touch her.
Sending continued healing vibes and good thoughts her way and yours. XOXO.

 

[Maja]

Good news, @KaeKae, and best wishes for continued improved health for Auntie. Hope you, your brother, and your SIL have a chance to take a breath or two.

 

[Maja]

@denverappraiser Here is the disclaimer: I have no medical training, I can only say what I've observed in a single case, my 84 yo dad, and I only talk about it here because it is anonymous, because I really want to respect his privacy when I can.
That said, it takes a team at this point, and doctors are one part of that team. Either the former internist (just retired) or the long-standing neurologist recommended NAMENDA a year or more ago for my dad, to treat dementia but since then (A) the administration has been inconsistent because my mom was handling that and couldn't keep up, (B) the dosage has been increased up or down by doctors attending my dad in the hospital so the baseline is flawed, and (C) NAMENDA is only effective on certain forms of dementia, and my mother doesn't care to find out which kind my dad has, he can't speak for himself, and I don't have the pull to get it done (or the legal authority) so it might all be wasted time, money and effort. And all for no measurable improvement in memory, no increase in vocabulary, no observably faster responses or smoother recall of past/future events--so is it worth it? Plus it has side effects, so is that what is causing his seizures, so now my dad is on an anti-seizure medication, which makes him sleepy, as in wants to sleep 14 hours straight? We can't let him, of course, he would get dehydrated, not be able to toilet himself, wouldn't be able to consume enough calories or do the physical therapy, and on and on.

Did your mother's doctor say why it is not recommended in your mother's case? There might be clear reasons why it isn't a good idea for your mom. But, as @missy said, new research is coming out all the time, and there might be a new or more effective medicine out there now. It sounds like wishful thinking, but the effort to find whatever is best for your mom is worth it. Best wishes to you and your family as you go through this.

 

[Maja]

@Lorelei and @perry thank you for sharing your stories, this forum is the only place I can come to hear how other people dealt with this situation. My friends are in the midst of it still with their parents, as I am, and it seems we are only learning part of what we need to.

@tyty333 Yes, I hear many sad stories, families and siblings breaking apart even before the end, then more guilt and anger after the death, more lashing out and bitterness, more unhappiness spread around. My husband's family handled their mother's decline and death amazingly well, but he and his brothers were fortunate their sister took it all in hand, lived with and cared for their mother, told her brothers when to show up to stay for a few days while she was on travel/similar. My SIL set a good example, and I hope we are that kind of family too. The other kind is just too depressing.