After my Father died at age 57, my Mother worked for several years before she retired at around 65-67 years old. She then began working at an elementary school as a paid volunteer, for about 20 years. In this capacity, she assisted a Kindergarten teacher and also served as a lunch room-aid. Mom is now almost 88 years old. Her cognitive skills have significantly declined especially over the 2 past years, and after consultation with the principal, teacher, and lunch room supervisor, it was agreed it was time for her to retire this past June. However, since school started this fall she is upset with me about not being able to "work." She CONSTANTLY complains of being bored and unhappy because she's "stuck in the house" all day with nothing to do. Mom is never alone. I am retired but do volunteer work and have Grandchildren that keep me busy. When I have to run out during the day, I always have a family member stay with Mom. (She refuses outside help and has threatened to run away if I hire someone to come in, or says she'll chase the person away.) Mom also receives phone calls and visits from family members at least 3-4 times a week. We take her out to eat, shop, go to church, etc., I buy her books, word search puzzles, and try to find things to occupy her time as well. Last week during a conference call with my siblings concerning Mom, one of my sisters who lives in another state, declared that if I don't replace Mom's "job" with something meaningful, Mom will feel like she has no "purpose" and will die. This statement is very upsetting to me. Mom, in my opinion, isn't capable of working. She has extreme memory issues, repeats herself over and over again, and is unable to rationalize or answer a thoughtful or probing question. She forgets conversations she had earlier in the day or says she never had the conversation at all, etc., etc.... There are many other issues as well that impact her well-being/safety. Is anyone dealing with a parent with dementia who STILL wants to work? How are you handling it? How do I respond to my sister who says Mom will die if I don't find something "meaningful" for her to do that gives her PURPOSE? Caring for her alone, even though other family members visit or take her out for a few hours when they can or when I ask them to, is exhausting. My siblings don't see or experience what I do (with Mom) every day. I feel that she's always mad at me because as she says, "she's bored and unhappy." It's hurtful to me because I have cared for her for over 10 years, including paying nearly all of her living expenses. Yet, she seems unappreciative and constantly complaining of her unhappiness about being "stuck in the house" --especially since she stopped driving about 3 years ago. Is anyone dealing with a similar situation? Does anyone agree that my Mom will "die" if I don't find something for her to do that gives her "purpose?" If so, what can I do? Thank you for allowing me to get this out. I could go on and on about how caring for my Mom has impacted my daily life, schedule, decisions.... but that would be a separate posting!! 🤦‍♀️

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Your sister needs a wake up call. Your Mom is not going to get better. She was lucky at her age that she was able to work this long, God bless her.

Will she die? Maybe, maybe not. My MIL literally willed herself to die. Why, because at 92 she could no longer live in her home in Fla. And even though she had 3 sons willing to take her in, she wanted to continue to be on her own. (We all lived 8, 12 and 18 hrs away. She chose to live in Fl)

Your Mom can no longer be reasoned with. She probably thinks she is still young. Like a child, she can't understand why she can't do. I think you are doing all you can. Actually, I think Mom has a pretty good life and support. But the disease is such she can't appreciate it.
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Reply to JoAnn29

I do not agree with your sibling that your mom will "die" if "you" don't find something for her to do that gives her life "purpose."

This is not the question you asked, but here's my additional answer anyway: I think it's time for your siblings to step up to help and time for you to stop paying your mom's expenses.
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Reply to Rosered6
gdaughter Sep 8, 2019
and watch how when you convey that the annoying phone calls saying bad things will happen will diminish because you will mention it every time they call:-)
If they think she will "die", then they need to step up and entertain her or find a day care place to send her, they have activities and she can make some friends. Don't continue to burden yourself with all this nonsense, time for others to step up to the plate.
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Reply to DollyMe

First I would plan a little vacation for mom and send her to visit the sibling that told you mom needs a purpose. Nothing like well meaning relatives that haven't a clue what they are talking about.

Is there anything in the house that she could be in charge of doing?

I like the suggestion of knitting caps for neonatal babies, would she be able to do that? Could she write letters to the troops overseas or work on making a care package for them? Can you have her go through old photos and label them? Clean closets that have been neglected for years.
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Reply to lkdrymom

I am sorry you are going through this. Even people who do not have dementia go through an adjustment period when they retire and when someone is forced to retire, it is even harder, I think. Your mom has not accepted her limitations and probably will not for awhile. It is part of the disease.
Is there a safe project she can pursue at home that is ONGOING and time consuming? Like GARDENING. Growing food is valuable and productive and could be helpful to your budget. It is repetitive, has steps, and keeps your mother mentally and physically a safe, enclosed area, where she can be supervised indirectly.

You did not tell us if she has any physical limitations...does she have any hobbies that she can share or “teach” the grandchildren? I am sure she misses that classroom interaction. She can still be a teacher to her own grandchildren and great grandchildren. Again, setting up a play station for Lego building etc, that us both adult/child height friendly could be engaging.

She has just given up her personal is frustrating to loose a job you enjoyed. Some of us cannot wait to retire and dump out of the job and everything associated with it. Others are blessed with a job they loved. Her whole world is changing...she needs redirecting of those skills.

my mother in law was an artist, but as her Alzheimers advanced, she REFUSED to do her hobbies. I think it was the fear of not meeting her own high standards, and not wanting to try when her home was filled with evidence of her work. Or fear that her diminished capacity would be evident to others....She stopped using her computer, she stopped visiting friends, writing letters, gardening, cooking, housekeeping, being engaged with family. All she cared about was her dog. So, we worked with that.

A very independent high functioning person reduced to watching tv all day.
Alzheimers robs more than memories and strips a person of their identity pieces at a time. A slow motion death of personhood amid physical decline. That is the HARD PART. No, your siblings don’t really get it. They are not in the middle of it daily...24/7/365. It is easy for them to criticize when they don’t understand that your mother may not be cooperative with her post retirement plan...or yours. I recommend you take a vacation...a real one...and do so soon before it becomes impossible.
Your mother will continue to decline. She will die. These are facts. It is time for family to face that your mother is beginning her journey to the end...and that best efforts do not necessarily alter the process. The limitations are permanent and increasing. It sounds like she has already lived an amazing and productive life, and was a very active senior. It does not sound like this will continue. And coming to terms with her impending decline is something the family has yet to accept. You, personally, cannot stop that. Neither can they. We do wear out...all of us.

You do not need the burden of guilt from family. Your mother still has some personal preferences and interests that can be honored and enjoyed. She remains engaged but do not be surprised if she soon withdraws and experiences depression and mood swings and frustration with herself. This is a transitional phase.

I recommend the book “The 24 Hour Day” for understanding.
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Reply to missmacintx
Intherecliner Sep 10, 2019
I agree that it might be useful to try starting projects around the house. Some elderly people keep themselves happy with vegetable gardens and needlework and other similar projects. Maybe this preoccupation with going to work will only be a stage. When she brings up work, could you say to her, "you have today off," and then put on a movie or some other thing to distract her.
Yes, my Mom worked all her life and even when she retired her little house kept her busy, but she was bored when she moved to Independent Living. I tried to tell her that this leisure life was the reward for her life of hard work, but she only partially bought into it. Of course they had activities all day long that I encouraged her to attend and she would, but she still longed for a more purposeful life. At the NH they would let her “help” at the nurses station. If your Mom used to do any crafts, knitting, or needlework etc, maybe you could set her up with a “job” with a goal like making simple hats for the the Rescue Mission or a similar charity. You say you do volunteer work...she’s probably too far along to go with you (?) but maybe she could do some stuff at home to help your volunteer efforts? Even if you end up not using it, it may give her a purpose. Maybe make easy toys for the local animal shelter? Is it possible to set her up with a day care for a few days during the week? I know this is tough especially when your siblings aren’t contributing much except criticism.
Helpful Answer (7)
Reply to rocketjcat
GardenArtist Sep 7, 2019
Your comment on toys for an animal shelter reminded me that Domi's mother might be able to make fidget blankets, or blankets for animals.

Or perhaps there's a way she can be a friendly petter for animals at shelters.
She may have an almost automatic response to all of the triggers of Autumn that surround her, but if she is cognitively impaired to the degree that you’ve observed, I wouldn’t be convinced that she actually wants to go back to the work that she was doing before her last retirement.

Might she consider “helping” at an adult daycare, if you happen to be near enough to one? My MIL was appalled at the very idea of going to on adult daycare, but after we asked the staff to ask her to “help” some of the other participants in the program, that worked pretty well for a while.

Depression and anxiety are sometimes overlooked when someone has more observable symptoms of cognitive loss, and your description seems to point in that direction, and agitation is another commonly observed problem.

Your mother is 88, with increasing cognitive loss. If Sister has an answer (sounds like she doesn’t) be sure to encourage her to take a shot at making Mom “happy”. If she’s willing to give it a try, she’s likely to be surprised that nothing she comes up with will make much difference.

Having dementia deprives the victim of rational thought. A sense of “meaning” is much more abstract to expect from someone who can no longer consistently remember. You are not doing anything that will hasten her death.
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Reply to AnnReid

What I can't get past is that your mother has lived with you for over 10 years, and you are paying her living expenses? Why? She should be paying YOU for living with you. What do any of your siblings contribute?
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Reply to CTTN55

I can relate to your mother, due to a sizable inheritance I've been able to retire early, and while in one sense that is a blessing in another I'm finding it difficult to find meaning and purpose in my days. Of course your sister's statement is hyperbole - people don't literally die from feeling a lack of purpose - but filling that niche or at least finding a distraction from those feelings can certainly help her feel less valueless. Do you think something like adult day care might be an option? If she is higher functioning than most there perhaps the staff could direct her in ways that help the others - I can remember one person on the forum commenting that her father thought he was working there😉
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Reply to cwillie

My 90 year old dad volunteered at a local cat shelter. He would go a couple times a week for an hour or two and play with the cats they had for adoption. It gave him a sense of purpose and the shelter loved him for giving the cats attention.
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Reply to Babs75
missmacintx Sep 10, 2019
Yes, I run a dog rescue. Dogs love being petted and brushed. It tends to be a win-win, and most adults are gentle. I haven’t started a program, but a neighborhood child with a learning disability has visited to just love on the dogs, with supervision.
He return home excited and fulfilled, talks about his experience with family and friends, and it improved his mood and personal confidence. Animals provide unconditional love and affection.
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