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!! 🤦♀️
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.
Seriously??? Did you read the original post?
"...Mom is now almost 88 years old. Her cognitive skills have significantly declined especially over the 2 past years..."
and
"...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..."
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.
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.
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!
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?
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.
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.
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.