What do I do when my 87 year old Mother, recently diagnosed with mid to advanced dementia still wants to work?

God love her it’s so tough not feeling like yiur part of anything anymore! I had to go on disability in 2011 @ 49 from the first of 3 back surgeries it was the death of me I felt so useless like life was over,the first few yrs going through pain and feeling useless I bout drank myself to death and yiur 87 yr old mother knowing she’s loosing something and near end is reaching for life sure it’s Terrable I can somewhat relate I’d say love her as yiu are and humor her the best you can make her feel like she’s goybple ty to give and the rest will take care of itself as the disease takes over. But I’ve also read that a certain diet high in certain vitamins and minerals are reversing dimentia as well as altymers I got a 7 part video that came in mail that started this weekend by a doctor who’s discovered this I haven’t got around to watching but if you would like me to send you what I’ve got so far I can it’s called life after waking up from altymers,let me know may help slow or reverse some anything is worth a shot!

Been there, with the elderly parent complaining about boredom but who is unable to follow tasks though. Having her go to Adult Day Care two days a week was useful. And the van provided transportation, which means they get to ride around and look out the windows, too. The day program also made her pretty tired, so she slept better on those days, and was less active the next day. So although it was a benefit for her, it was a big benefit to me. It did involve some extra fooling around with forms, quarterly reports or appointments, van not showing up on time, and so forth.

A lot of the suggestions on this thread could be perfect for the right person, but many seem to make more work for the caregiver. Researching, calling around, finding volunteer things, etc. There's only so much you can do,

Also, I personally would not want people with dementia volunteering with children. Dementia is unpredictable and they have no filter.

One of the biggest challenges with dementia is the difficulty to initiate activities. Boredom is a huge issue for most dementia patients as they often lack the ability to plan and execute activities to help keep from being bored. Your mom obviously has a deep need to stay busy, work and feel productive but she can't meet that need by herself anymore. If you ignore it her mood and behavior will continue to get worse. Unfortunately, just making suggestions of activities she could be doing wont work at her stage of dementia, she needs structure from others to perform activities. She will need either an aide, a family member or some other person to work with her on activities. I think previous suggestions of an adult day program would be ideal especially if you can sell it to her as a volunteer job or her going to work. Some programs have inter-generational programs with kids and that would be ideal if she is used to being around kids. The second challenge you are having is she lacks insight to her decline and need for help. This is also super common and neurological and not something you are going to fix through talking. She can't see the need for an aide. She can't see why she can't work at the school and there is no right words you are going to be able to use to convince her. She has threatened a tantrum if you hire extra help but this is not something she gets to decide due to her level of dementia. You decide for both you and her what is needed and then figure out the best way to sell her on it. Wording is often crucial. Avoid triggering words like "Day Care" "Nurse" and "aide". Try "activity center" "Volunteering job" and "My friend/housekeeper". Look at your options, and decide what works best for you. Don't ask her if she wants or needs help because that will just start an argument and get her angry. Just say "we are going to a new volunteer job tomorrow (or today if she gets anxious with too much lead time). "We will try it for a month to see if it works out". If you decide on an aide to help her keep busy: "My Friend Rosie is stopping by tomorrow and she wanted to take you out to eat/ to visit the library". The main rule is she doesn't get to hire or fire aides, they are your employees and are there to help you out. If your are looking for something an aide can do with your mom, think back to older skills and hobbies (knitting, sewing, music, cooking ect.) and have them work on projects together. This is a super common and very challenging part of the disease. You are doing a great job and it is okay to put your needs above her tantrums for the greater good of both of you.

First of all tell your sister unless she is willing to take in the responsibility of caring for your mom full time to butt out. Do not let her or anybody guilt trip you as they are not there 24/7 to take care of your mom.
Your mom can not work or volunteer, is there a day care program she could go to, and insist that family helps pay or money from your mom should help with the cost.
If you haven’t then do so ASAP contact an elder law attorney, you should receive compensation for the care you provide for your mom.
Also the time may come when you can no longer care for her at home, if and when that time comes it us not your financial responsibility to pay for the care.
Trust me all the family members who have done nothing to help care for her will give you grief about placing her.
Do not let them, tell them they can provide the care you have done for ten plus years.
You need help as your mother is guilt tripping you and you will have a break down, you need a break.

I understand being upset by your sister's statement. When you are not the one doing all the caregiving it is so easy to say things that you have googled or read. She can certainly voice her concerns over her boredom and trying to find something that would make her feel needed but trust me, she will not die from boredom (sounds like something my grandsons say often:)) When I first started taking care of my mom she was a pacer. Just couldn't stay still and wanted to walk outside. At first I would let her (watching to see where she would go) but then I knew I had to do something else. She worked all her life and retired from a very good job so this is what my suggestion would be only modified for your mom. I told my mom that her company needed some "help" and could she possibly help them out....yes, she could do it at home, then I would take it to them. So Ihad her stuffing some envelopes with junk mail in them or I would fold some scrap paper at night (after I got her in bed) while watching tv and then collapsing myself. She did this and thought she was helping them out and was happy until she couldnt do it anymore, then she just didn't have the mind or would forget what she was doing. So....all that being said, maybe you could get some coloring books and tell her the school is "needing" her help on a project and she can do it at home. She can tear out the pages (I'm talking cheap coloring books here, The Dollar Store) and put them in envelopes so that the children can color them at school. Or heck, she could even color one part of the page so that the kids can finish it. At least something along that line. IF you want you could even take her to the school office once a week and "deliver" them. I would call first and let them know. That way she would have something to look forward to and not be angry. This could help for a little while anyway until her next step (and yours) in this dementia journey. Good luck to you and may God Bless

After my mom retired at age 65 from her career job, she did several part time jobs as well as volunteer jobs until she was not capable because she was making too many mistakes and causing issues with remarks she made.  When she was finally diagnosed with dementia and Alzheimer's at age 86 (although we knew something was wrong LONG BEFORE age 86), I got her.  I have dragged in stuff from the church to do as a volunteer project, I have taken her to places to work along side her for volunteer projects, and now, I don't know since her Alzheimer's is getting advanced, what to do with her.  She cannot follow simple commands when I am cueing her on things.  I would suggest simple things that she can do at home like fold laundry, empty small trashcans found in bathrooms and bedrooms, feed the dog/cat, dry the utensils, etc.  Things that you start your kids out doing.  Things that need to be done that are "busy" work.  This gives them something to do, helps you, and it isn't out of the question that they can do it successfully.  This helps them to feel needed.

After my mom was diagnosed with dementia, she continued to volunteer in the local library shelving books. She could still recognize numbers and their relationship to each other, so she was able to shelve them correctly. She did that for about 3 years and then I got a phone call saying they had to go behind her and re-shelve everything because her number cognition was failing. So I told her they decided to hire someone full-time and were cutting back on their volunteering.

But until then, my mom went once a week and was so happy to be a part of the library. If there's something she can do to feel a part of a group, and to show that she's still "there," then definitely have her participate. It would be the best if someone around her could just keep you apprised of her condition and give you a heads-up if her cognition slips. Good for you for trying to give her any happiness that you can. I've always told my mom that my priorities as far as she's concerned are: 1) Safety, 2) Health and 3) Happiness.

How fantastic that your mom was able to work until almost age 88! She must really miss her job helping out at the school. She's grieving the loss of that daily interaction with the students and faculty.

Is there something that she could do there? Can she still read books to children? Hand out cartons of milk? Anything? Just wondering if there's any way she could still interact with the school, without it being a structured job.

Your mom will not die because she doesn't have a meaningful job. Perhaps your sister was trying to be helpful but that came out all wrong on her part. It's not your responsibility in this world to make anyone happy, by the way. And if your sister persists with this ridiculous notion, then put it back on her and make her responsible for figuring this out. Why is this your problem?

You have met all of your mom's needs and actually gone above and beyond what is expected or required. What is your family's plan (not yours...your family!) about your mom's future?

Have you considered Assisted Living at this point? If it's affordable, then AL can provide a lot more daily structure and stimulation. What is going to happen when the dementia worsens?
OR is there an adult day program? OR is there a place in your area where your mom can interact with children, because it sounds like she is good at it.

Have you yourself found a professional therapist who can guide you and be a sounding board?

Alll one can do right Now Somehow, Is perhaps Take Mom out a little More so she is not Bored. Show her Love, Patience and Kindesss so her Lasting days are More Meaningful, Such as you Job she was Used to having.

Finding meaningful things to do for an 87 year old is difficult. Truly helpful, physically possible, but not dangerous to anyone at all, is a hard set of criteria. Even knitting soon gets to be too hard. In my MIL’s Nursing Home, it turned out that most of the visiting volunteers were themselves quite elderly. They had the time and the patience to sit and talk with others further down the track who really did need them. They were also a big help with some of the school activities, to sit with the school child and the older resident to help oil the wheels of conversation. They could sit and talk to residents about old songs, and give a list to the NH about what they could play over the sound system. If they got things wrong, it didn't really matter. Sometimes making mistakes and laughing over them was actually a plus. Could you think of something along those lines?

My mother complained of the same thing. She was legally blind so I gave her stamps and address labels to apply to greeting cards. If your mother can fold simple laundry items, then have her do it.

Does she knit or crochet? If she does, she could make newborn hats for the local hospitals. When my daughter was born, she was gifted a crochet Santa hat made by a volunteer (she is a Christmas baby). She could also make stuffed animals & toys for local animal shelters :)

What about giving her "busy" work such as filling bags with items for a shelter (tell her it is for the children) or recording her reading a book (also for the children)? Filling shoe boxes to donate for Christmas (following their list of acceptable items). You get the idea. Make her feel like what she is doing is going to help the children.
I'm in a group called "Dolls for Appalachia" which is a category under the ministry of "Putting Prayers to Action" in Kentucky. I sew doll clothes and refurbish dolls for donation. However, they also do what they call "blessing bags" with small toys, scriptures, pencils, colors, etc. that they give out. this would be perfect for your mom. They post videos on their website or Facebook pages and you get to actually see your gifts being given to children. So rewarding!

There has to be something somewhere that she could do to find her purpose again. Call one of the state agencies to see if they have any paper forms that need to be stamped (info handout forms). Maybe a local business that needs envelopes stuffed. Senior citizen community center may have some sort of activity she could participate with or assist with. Church bulletins often need to be folded prior to passing out. Does she knit or crochet or sew - small blankets, winter caps, etc could be made to be donated to child protective or other group who might need them. Quilting and sewing clubs. As they used to say in elementary school, put on your thinking cap and find some busy work for her where she can also be around other people besides you and your 4 walls.

There's something about "working" that gave your mother "purpose". I wonder what that is? Is it a sense of feeling important, feeling needed, or being in charge of something? I came to ask myself these things as I had the same problem with my father who also wanted to "work" at 90 and wouldn't shut up about it! So, in his new AL complex after one of his many "I need to work conversations", I asked the complex management if there was any "job" he could do. They were delighted and said there was alot of work! They gave him a "job" working in the laundry putting sox together and such like. He accepted and said he was looking forward to his job! Do you know how long he lasted? He didn't even show up to his first shift!!! Perhaps if he was offered the management position, he might have decided to show up... who knows... It's impossible to meet a parent's needs when the needs are totally unrealistic. Throw dementia into the mix, and they might think they are still 30 years old and can't understand they they can't work.

Hello, you are right. This is one of those tough situations. My Dad had similar inclinations. I was fortunate to find an Alzheimer's Center that went along with the idea that Dad worked there.

He was formerly a business owner of a grocery store. They had trays from old cash registers with play money that he would try to count out and he was in charge so he made sure everyone was doing their part to keep the center organized and clean.

He would come home content some days however upset days when he thought the "employees" weren't earning their pay but all and all he was content.

When it was pay day, we'd tell him his check was direct deposit because companies no longer write checks which was true.

It was hard to say good bye to that center when Dad could no longer go however I went back and thanked them because they made Dad's life during that time meaningful.

My friend Janet had a her Mom making Kleenex box covers with yarn. They would then donate them to centers or any business to their office people. I've had mine for about 5 years. Her Mom passed away 2 years ago.

As the saying goes, "People have to have a reason to get up in the morning". We just have to find something that will work for them. Keep looking. Maybe there is a center, church group, etc that will let her help with some tasks. Some places have food pantries. Other places need people to fold clothes they give away. Nothing to difficult. She may be able to help a few hours a week.

Just something to make her day. It's worth a try. Take care.

Have you tried a day time Senior group where she go, meet new people and play cards, or whatever they offer. We have a great OAP,  Old Age Pensioners group
the go on trip to gardens, to movies, plays, etc. etc.  Maybe see if you have a group close that she could attend. Let it me her group and  leave after introductions.
My dad was bored living with us, I found a group that picked him up, all sorts of activities were held, they would have lunch. Brought him back about 2 in afternoon.  He loved it and made friends,  Anything like this to keep her mind busy.

Let her work. Her boss can determine if she is capable.

We are all going to die someday, with or without a purpose! At 87, your mom is closer to natural death. Some people never get the chance to live into their 80's. However, while she is still alive, Adult Day Care may be a good option. It will give her a place to go a few days a week. It will provide social interactions with her age cohorts(some younger than she) Adult Day Care tries to provide meaningful activities for disabled seniors. When I worked as a geriatric care manager, several of my clients went to ADC. There are activities geared to those with cognitive decline available.

My mother went to the senior citizens center once or twice a week where they had lunch and played cards, etc. They would also take them on day trips. Don’t let your mother bully you. These old people know what they are doing. Tell her to work in the yard, cook dinner if she is capable or clean house. They can read, watch tv, etc.

I hear you Domi. My 85 year old mother came to live with us in 2013 and about a year after, she started accusing me of stealing her money and household items and would inform my siblings of it every chance she had. I even converted my garage into a kitchen/living room and gave her a bedroom and restroom for herself so she could feel like she still had her own home. It was very hurtful and thought I would breakdown with the sorrow I felt, but thanks to God, my insurance offered over the phone counseling. I took two thirty minute counseling sessions over the phone and I snapped out of it. Not that everything is smooth sailing but it helped. As far as siblings putting in their two cents worth, I very kindly told one of my siblings that thought I was not doing enough that I loved mom very much but since he and his wife were retired and I still worked, that I would be happy to move her to his home so they could give her more attention than I could and I would even pay for the expenses for the move. That was the last I heard of any complaints. Mom can still stay by herself all day until I get home. She has dementia but she does not leave the house. She gets headaches from being indoors all day but does not want anyone to come and stay with her. She tends to her plants and flowers a few times a week and during those times, she seems to be herself. On Saturdays my sister and I take her out to eat shopping though she is in a wheelchair so she can have something to look forward to. Sometimes she is mean to us and says hurtful things no matter what we do, but we try and keep in mind that she is not the same mom we knew and that her illness probably makes her restless. My little sister lives two houses down and she is a blessing to us. She takes her lunch every day and gives her her meds. I can only imagine how you feel, with two of us it is overwhelming. My sister only sees her boyfriend about three times a year (he is going through the same thing w/his mother) and I feel like I am not even married though my spouse and I are together. Hang in there Domi, you are truly a gift from God to your mother and even to your sister even if she does not realize it. Being a caretaker of a parent is a huge thing to do. In the end, I believe we will have the peace that we did everything we could for our parents while they were alive. Our mother often favored the boys in the family, but it is the girls that take care of her. I bet you will be sitting next to Jesus when your time comes for the great daughter that you are/were to your mother. May the Lord Jesus give you the strength you need to get through this. Syl

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 engaged...in 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 career...it 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 abilities...it 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.

I feel so bad for both of you. It is not easy to be in the position of having to support a decision that has a negative impact on your mother. It's not easy on your mother either because most likely she feels rejected and unnecessary. Does the school have a need for unpaid volunteers perhaps gearing an activity to her cognitive level? Is it possible for her to visit the school to see the children? Or is there another agency where she could volunteer? Library? Sunday school?

If she was at a memory care unit they would give her jobs to do. Maybe she could volunteer at the school cafeteria by putting silverware on the trays or picking up the dirty trays. If your sister isn't involved in the daily struggles she doesn't understand what you are going thru. You are doing the best you can do

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.

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.)

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.

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.

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.

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.