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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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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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gdaughter Sep 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:-)
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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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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.
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GardenArtist Sep 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.
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Just my opinion...I see that you are providing good care for her, but WHAT can she provide for herself?   She needs to feel useful, and to be a part of the family, not a visitor.

So, what can you do to integrate her into daily life?  Even if she's confused and forgetful?    One of the standard recommendations I've seen here is folding towels.   Can she do dusting?  Gather ingredients for cooking?  Set the table?

Even if you have to do things over (w/o letting her know), find a way to integrate her into the family and let her do things for herself.  


I've experienced this personally as for some reason younger people seem to think I need help packing groceries and putting them in the car.   It's kind that they think that, but I don't want their help.   I'm going to be self sufficient for as long as I can, although I have stopped climbing ladders and doing heavy work outside.   (I do wish though that someone would help me when I have to lug out heavy stuff from Lowe's or HD.)


What about acting as a friendly visitor to people who get Meals on Wheels?  Or selecting and signing good wish, get well cards to deliver to the Senior Center, for the  MOW people to take to shut-ins?

My father periodically received hand-made cards and greetings from grade school classes for children.   It was heart warming, and created the feeling that he wasn't alone.   You could buy a pack of cards, let her choose what to say, then take her with you to the Senior Center for selection on recipients.  And be sure to give her feedback afterward.

One of our long time members has helped in hospitals; I'll PM her and see if she has suggestions.  You could buy Get Well or cards that just let children know someone is thinking of them. 

(But have her sign as a "friendly grandmother", or something similar.  When you're delivering cards or something for people you don't know, don't provide personal information.

Decades ago there was a site with lists of tasks people with dementia could handle.    You might contact the Alzheimer's Assn. to see if they have such a list.


I think the whole issue here is not to pamper the older person, but help him/her retain a sense of purpose.  

My father was active well into his 90's; I'm sure, and doctors have affirmed this, that purpose helps older people focus, validate their existence, and live longer.

It may be a challenge, perhaps more than you're facing now, but think about all she's done and how you can integrate that into her life today and for the future.  And ask her opinion, even if she won't be able to offer good suggestions.
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missmacintx Sep 2019
Hmmm. I am not sure you have had the full Dementia/Alzheimers experience.
Sense of purpose, validation, etc implies a healthy brain. That is not the circumstance here.
This woman’s mother is in PROGRESSIVE DECLINE. This is likely a transition phase where memory issues will challenge the person’s own reality, sense of place and time, and recognition of loved ones. Judgement and rational thought/logical thinking become very patchy. The caregiver clearly sees this starting. The family members do not.
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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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Could it be possible for Mom to go visit with other Seniors, or would that not work at all. My brother is the most mentally well person, other than two other gentlemen, in his assisted living; he helps other seniors quite a lot. In part I think he loves this and at time I think he burdens himself with it. But it is his choice and he does seem to do it. Might it help for her to go visiting. Is there any way she COULD come to school in any classroom? I would doubt it, but wondering if there might be a way. I know you would have to be there, so I can't imagine the way, but just trying so hard to reach for her. It is awful to feel of no use and to know there is no upside, just a long slow slide into oblivion in which more and more of your control is ripped from you the slow way.
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Try this website -

https://www.alz.org/local_resources/find_your_local_chapter

- and see what they have to offer in the way of meaningful occupation for your mother. Doesn't have to be work, exactly, after all; just anything with a structure to it and work-type contact with others.
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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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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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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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First of all I think its a positive that she wants to work. My dad would never give up doing his things and when he finally had no interest, we knew he was on a downward slope. So that fact she wants to work is a plus on one hand.

But I guess the fact is the school does not want to hire her, and probably for good reason. I am a generation younger and was forcibly retired, and while money is not an issue for me I can empathize with your mom about a lack of purpose, reason to get up etc.

Are there opportunities short of her job where she could do productive and contributing things for perhaps a few hours a week?
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can she go to the local library and read to the children? I have thought about this for my own mom
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This isn't going to be much help, but maybe the school could have another volunteer be her buddy...so she could still kind of continue in the same or similar role. My mom had been volunteering at a hospice sponsored resale shop for over 25 years, since it opened. At one point the manager contacted me to say there were some problems...like mom telling people things were on sale that weren't, or rearranging displays they had set up...so they wanted ME to be present on the day they told her she was done, and then there would be punch and cookies! NOPE. I told them I understood they had to do what they had to do, but I would not be a part of it. I was already in the evil daughter role. So they kept her on and some of the other volunteers were sympathetic and kept an eye out...but as time elapsed things were not working out for the shop, less foot traffic, higher rent and they made the decision to close. WHich mom had to keep being reminded of every week she would get dressed and ready on her day. It took a really long time till she stopped asking, and even Dad took a picture of the empty store that said FOR RENT in the window. There really needs to be a safe activity center for people to do something creative or engaging. Of course many don't want to leave the house...
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whaleyf Sep 2019
It's called adult day care. I have a neighbor who goes every day and loves it.
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Her quality of life is diminished without work or purpose. Maybe look for a volunteer activity she can do at home for the kids. Making cards, cakes or cookies for the school. Picking books and video on phone to be given to students as a prize for best readers at the school. Ask your sister to help you get creative and figure it out. Invite her to invest in that activity too if needed.
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missmacintx Sep 2019
Her quality of life is changing. Dementia is progressing and it does mean that decline will continue...and even when some volunteer projects or opportunities are done, eventually, even these will stop. It is a transitional period of discontent...with everything. It is a grief process...and a normal part of our journey toward eventual death. Yes, the brain is dying. It is hard to watch, knowing the person’s before story so well...sometimes the focus must be the essentials being met. That is a must.

The caregiver must remain well. After 5 years of caregiving and working full time, I had many health issues pile up, and I suddenly CRASHED, a few months after her death. I must have been running on empty a long time...just pure adrenaline.
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Rec centers, Y's, assisted living places.... all allow volunteers. No more than 2 hours at a time, though, because the usually dementia patients get cranky very quickly "at work"
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The ones who think they are still self sufficient are the hardest to deal with; I send a hug your way because theres nothing to do that doesnt include more work and stress and time from you. I know.
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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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I can speak from experience. My mother continued to teach until she was 89 - she had been showing signs of dementia but still was going to work. The last year she could no longer drive herself (getting lost for hours), but we arranged transportation. It became obvious that she needed to stop teaching to everyone but her.

That was three years ago. It is easy to suggest other types of work, but her capabilities to learn and remember are greatly diminished.

It is difficult for family and friends to comprehend much less accept that this person is not the same - not just a bit less capable, a bit more forgetful. This person can not learn anymore. Is not improving, is not the same.

You cannot meet their expectations. Even living with it day to day, it can be difficult to accept that your mother is not the person you remember.
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First of all if your mom dies then she dies. She’s old and is actually living beyond average life expectancy. Now living without a purpose may make a person depressed but it won’t kill them. My dad hasn’t had a purpose for years and is 98...see what I mean? Now as for your sister, tell her that’s ridiculous and arrange a week when you can have mom stay with her or for her to come to your home while you take a much needed trip. Then she can see first hand how mom truly is.
Your mom can do some socializing at a senior daycare or center. There are volunteer organizations who pair the elderly with a child as a "grandparent "...would that be helpful?
Having said these things, it is not your job to give her a purpose. You have the job already of providing for her, keeping her fed and safe. That is stressful enough without worrying about her purpose. As for complaining...that’s what people who aren’t happy, elderly people and folks with dementia often do. Again...you can’t change or make them stop. It is what it is, as they say.
Get your sister involved with mom’s care...she’s all talk and no action.
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Hi domi. Having read Your Post I felt kind of sad for Your Mom at 87 years and still wanting to work. Unfortunately due to Your Moms diagnosis Her work Life is over, finished.
It is very easy for Your Sister to comment when She lives in another State, would She be willing to step into Your shoes and Care for Mom 24/7 in Her own Home.
Finally and please do not take this the wrong way but Your
Mom is almost 88 years and has lived a long and healthy Life and death awaits all of Us, so just let it be. We can not fight
our destiny. Try to get Your Mom to join a Club for the retired and to enjoy Her new Life.
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Maybe she would enjoy attending an adult day care center? They could let her do things to "help" and she might feel useful. It would also give her something to do to make her feel useful. I live in an independent senior apartment building and one lady goes all the time and enjoys it. My grandmother also went via scat buss and enjoyed it too.
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Adult Day Care. Talk to the staff there and arrange for her to "volunteer" at the Adult Day program.
That will give her something to do and it will get her socialization and it will get her out of the house in a safe environment. And in her view it will give her a purpose while in yours she will be out of the house and safe.
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I can identify with wanting to get out of the house.
So maybe keep it simple, and get her out of the house regularly.
Maybe the visitors can take her somewhere.

And the upsetting things a sibling can say to us that we often take too seriously.
That is hard to let go, to let their comments roll off your back like water off a duck's back.

If your Mother can volunteer at a senior center, they can use her help, and will understand the cognitive decline.

You are very caring to be so conscious of your mother's well-being.
Good question!
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Can you explain you need her help around the house due to your busy schedule and “hire “ her ie give her jobs she could handle? Like folding laundry, helping with meals? Or can you take her when you volunteer?
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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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missmacintx Sep 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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Something funny happened when my mom also wanted to continue working, after she was diagnosed  with Alzheimer's. We were in the waiting room of an  eye doctor's office (for me), and she spotted a "Help Wanted" sign. (I think it was for a receptionist's position, but I'm not sure.) My mom said she was going to apply for that job, but I told her it was for a medical position, and she agreed that she had no training in that. She then tells the guy next to her that after college, she had to find a job in NY, (which was true), and she  wanted to say that she pounded the pavement, looking for a job, but what she said was, "I walked the streets of NY, if you know what I mean." My mom might have been a  sweet talker, but she wasn't a street walker. I even wrote a book about our travails taking care of her: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." Regarding your mom, does your area have any senior activities? Some areas have senior citizen facilities and the activities  are free. They have art classes, activities, etc., for senior citizens with or without Dementia. Some places will even provide free transportation and free or reduced cost lunch.  Also, I wonder if she and/or the school system would be amenable for her to go in once a week or once a month and read to a kindergarten class, (if your mom can still read). I don't know if that would help or hurt the situation, it's just a suggestion.
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Many helpful suggestions here. You need to (yes, I know, I said "you need to") arrange a week's long distance vacation for yourself, leaving the minute your sister arrives. If she calls you for advice on this or that, that's okay, but if she demands you return home sooner than planned - don't answer your phone! ("The phone connection is horrible - all I can hear is static!") Take your week off. Your sister won't have any more nasty remarks then because her eyes will be opened to the whole situation. You could even try this with the other siblings. Yes, this might be wishful thinking. Good luck!

As for your mom, allow her to arrange the transportation (senior transport bus) and job finding up to her. If she finds transportation and a job by herself then let her go back to work. She'll be forced to use the phone, newspaper, or computer and think logically in accomplishing her goal. (According to your post she won't be able to perform these tasks.) Meanwhile, you search for an adult day care where she will be safe, happy, and hopefully enjoy taking part in the activities. My dad loved ADC and was able to do things he never experienced as a child; e.i., crafts, painting simple projects, etc., games, and companionship. Loving on a dog/cat would be great if you are able to locate an organization who would welcome her, but as she declines it may not be a good idea (tripping hazards, biting if she forgets to be gentle, etc.) My parents and in-laws are gone now, some of these tactics worked for us and may work for you too. Best wishes.
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Aside from "purpose" issues, your mother sounds like she could be an extrovert who needs/thrives on interaction with others. Unfortunately, she may not recall the interaction she does get. (Wow! Hadn't thought of it that way before.) As for your sister, has she spent extended period(s) of time with your mom any time recently? Many people with dementia can seemingly "hold it together" for a while--a few hours, maybe a bit more. But over the course of several days the problems can't be ignored or explained away.
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domi1205;

"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."

It is very unlikely that having no "purpose" will cause mom's death. It might contribute to some more depression or anxiety, but not death.

You just have to love it when ANYONE, not just family members, offer comments like this, but provide no suggestions or ways to help. You can acknowledge the need, but turn it around on them and ask for ideas! Response - I am fully aware that she "needs" something to do, but come up with some ideas sis rather than telling me she needs a "job." Just making this ridiculous statement doesn't help. I like others' comments that suggest having sis take her for a week or more and let HER come up with some ideas! Let her see how difficult it is to keep mom "occupied" and "purposeful" and happy. If other family only "watch" mom for short periods, they have NO clue.

For you, think about any other activities that mom liked in the past. If she is capable of making anything, such as blankets, knitted items, "care" packages, etc for kids, seniors, cats/dogs in shelters, etc, she would be helping them and keeping busy. Keep any projects like these simple. Delivering items to others in need might also make her feel more useful. It sounds like she needs more interaction with people. Having been a teacher and volunteer at a school, she clearly likes being with/helping others. "Helping" at an adult day center might work too. She would get out, see/interact with others, and perhaps feel useful.

The only problem with any kind of volunteering is that it would need to be in a supervised capacity, which might mean you would have to be there. What volunteer work do you do? Could she participate in any of that with you? If not, perhaps you could find other volunteer work that would allow her to join you. Pet shelters are a good place too, however unless they can keep an "eye" on her, it might be harder for them to accept help from her. On the other side, some people just are not pet people - our mother would NEVER do something like that! She might like seeing the little dogs other people have, but not want to care for and hang out with them.

I do hear all the complaints about being bored, nothing to do, stuck in here, etc, but our mother was not one to want to do any "work" outside the house after retiring. She and our father had a whale of a retirement until dad became too hard to manage. After he passed, she would socialize with some people from her 55+ condo area and go to many activities at the senior center, especially the free or low cost meals (they'd all go with bells on to those!) As dementia set in, she eventually self-isolated, making excuses not to go with the others, or just refusing to go out. Now in MC, she still complains about having nothing to do, but any suggestions are met with the hand wave off... Since your mom has the 'drive', keep trying various duties and tasks until you find something she likes doing. With that thought, perhaps she would like to "help" in a MC facility? It WOULD be a safe place for her, give her something to do and maybe help the staff (setting tables at meal time, bringing meals to the tables, helping to feed those who need help, socializing with the residents, etc.)
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Sixpacbabe Sep 2019
I am also taking care of someone with dementia. It is over three years now since we took in my boyfriends mother after her husband passed. I have tried everything to keep her occupied. Nothing works because with dementia she can’t remember things and does the same as your mother does. Says she is board, does not want to live this way etc. Don’t listen to those that are not in your shoes. They do not understand what it is like dealing with someone that has dementia. Your mom probably gets on the phone and complains to everyone about her unhappiness and how board she is. They feel sorry for her and blame you. They don’t understand as soon as she gets off the phone with them she does not remember talking to them. They know what to say at the time to get sympathy because they are not taking care of her. They truly need to take her for about a month to understand what is really going on. Don’t feel guilty, you are not doing anything wrong. You are the one that has given up your retirement to take care of her. Ignore the ones that try to tell you what she needs unless it is a professional. Trust me it does not get easier. You will need a thick skin to not only deal with what’s to come but with the ones that try and make you feel as if you are not doing enough. Set up some time with a Phychiatric doctor. They will give you some great advice not only to help your mother but also you. Good luck!
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Could she read storybooks to children? Since she has worked in a school setting for years, perhaps she could be part of a school or library storytime that takes place once a week. Still with children but way less responsibility and confusion.
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MargaretMcKen Sep 2019
Brilliant idea! Makes it an extension of her previous work, which helps heaps!
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