My mother is very lonely. She refuses in-home help. She refuses assisted-living. Her friends are all dying. She has no hobbies. She doesn’t enjoy reading anymore she just stares at the television. She doesn’t initiate phone calls to anyone. People rarely call her. She has very few visitors. She expects me to be over there all the time, but my visits aren’t pleasant because I am the eating and medicine police. She doesn’t take her medicine without prompting. Now she has started telling me she’s taking it, when she has not. She doesn’t want to eat. I order delivery on a daily basis. She picks at it and that’s it. I don’t know what to do with her and I’m feeling very guilty because I know she’s lonely. I work part time and have a lot of activities. I don’t know how to cheer her up or get her in a positive mode. She is stage 4 dementia/Alzheimer’s and does not think anything is wrong. She’s just not as sharp as she used to be. She does not cook. She won’t even microwave. I’m afraid of doing anything that will make her even more dependent on me. I just don’t know what to do. As I’m reading some of the other comments, I’m guessing I have to let things fall apart before I can take any action. Otherwise it’s going to be a royal battle. What she really wants is for me to quit everything, move in with her and take care of all of her current needs. She refuses in-home assistance because she said she doesn’t need help. But she does.
Has she been seen by a geriatric psychiatrist for a workup? Has she been prescribed antidepressants and won't take them?
I would not be the food and med police. Visit with, tell her how much you love her and let her make her own decisions about what to treat with meds.
You are more valuable to her as a child than as an enforcer.
Its really not your responsibility to entertain her. If she is lonely and can afford it an Assisted Living may be the place for her. Sounds like there may be some depression. I would get her a good physical. Labs will be taken to see how her numbers look. She could have low potassium, Thyroid problems, etc.
If not, she is no longer indepepdant. She is living alone, dependantly.
Therefore will need a different living arrangement sooner rather than later. Either adding in-home aides to supervise, prompt or assist ADLs or move into supported living.
The problem of lack of insight into her own needs (due to either cognitive changes, depression or both) is a common one. Also apathy (again, cognitive ie loss of planning skills or depression).
So much easier to stay sitting in your chair saying no, right?
Does Mom have a trusted Doctor to talk over her situation with? Sometimes a "It's time to move" chat from a professional helps.
At present you are holding her house of cards up.
Get your ducks in a row before you lower this house down & arrange the type she needs going forward.
I would consult an elder estate attorney and start looking into facilities in your area. I would brainstorm with MD about best next steps.
This is very difficult and a lot of work. Sending love your way!
If that diagnosis is legitimate, it means that she does require “management” to be safe and live whatever should be her “best” life.
”Dementia” is comparable to “pregnant”. You either HAVE IT, or YOU DON’T.
Either way, as her “child”, you may all or partly responsible for her physical welfare. But you ARE NOT, and CANNOT BE responsible for how she FEELS about what you do or do not do on her behalf.
“Dementia” MEANS that neither her logical thinking brain NOR her emotional feeling brain are working correctly, and dementia, THE ILLNESS, is PROGRESSIVE and UNTREATABLE.
What she wants, what she expects, what she likes or doesn’t like, what she thinks about her own circumstances, ARE NOT YOUR RESPONSIBILITY OR BURDEN, and you cannot allow your guilt to be what motivates your decision making.
If, as you pursue safe, humane, and ESSENTIAL CARE for her, she has tantrums, cries, acts clingy or “more dependent” on you, HER behaviors will do nothing but make YOUR efforts harder.
I have had to place TWO women who had been the center of my life since my birth. The hardest part of that process FOR ME, was realizing that the people I had loved and been cared for and trusted WERE GONE, and that those two people needed ME to care for THEM.
Do your research. Find out what services, care settings and geriatric resources are available to you, then pick those that will work best for her and for you AND USE THEM.
AND THAT IS ALL YO CAN DO. If she acts in a way that is so distressing and disturbing to you that pushes you beyond YOUR TOLERANCE, GET HELP FOR YOURSELF, and stick with it until you are able to see yourself as being able to do the best you can, but NO MORE THAN YOUR BEST.
In geriatric management there are often NO GOOD CHOICES, and it becomes your job to choose “the best of the worst”. DO THAT.
Finally, use her financial resources, if you can access them, to do for her what she needs. Find out. Do NOT “quit everything”. You are an independent human and a caregiver, and her decisions about your life are clouded by dementia, and should NOT be accepted by you as doing a good thing for either of you.
Do the research and know how to get what she needs without sacrificing yourself. If you can do that, this situation CAN get better for you both.
Thank you for your response
And even if you ARE the only family member left, you STILL have nothing to feel guilty about.
"Totally denies depression, but yes she is depressed. We are giving her medication for it, but I don’t think it’s working. We’ve had the work up done by geriatric psychiatrist. He pegged her as a controlling, manipulative little thing. We have gone over her results with her several times. She refuses to acknowledge. I feel sorry for her. She’s totally screwed if something happens to me. It’s a helpless feeling."
You don't get ant results by going over a psych report with a dementia patient.
She is not going to change her behavior. However, if YOU change YOUR behavior, something will change.
Your mother seems to have your cornered.
If you leave that corner, will she simply stop eating and drinking and taking meds?
Perhaps.
Thn she can be hospitalized for self-neglect, declared incompetent and placed.
That might be a good change.
My mother did not want to live in Memory Care either, but she had no choice. I had to move her there from regular Assisted Living when her mobility issues along with moderate dementia became too much for the AL to handle. She insisted there was 'nothing wrong with her' but there was. She was not capable of managing her apartment any longer in AL, so there was no other choice BUT to move her to a shrunken down world where there'd be no decisions for her to make anymore. She wasn't best pleased about it, but that's life for an elder with dementia that's advancing. A no - win situation for ALL concerned.
Wishing you the best of luck getting your mother placed now, before an accident happens.
That little ending to your reply really stands out to me.
We let our children 'fail' from time to time, in small safe doses, to allow thinking, decision making & judgement skills to grow.
What would be the result of allowing your Mom to 'fail' now? She could dint her pride, but so much more... Lose self-esteem, lose trust in people, get confused & increased anxiety/fear.
"Set someone up to SUCCEED with their task!
Don't set them up to fail".
I think it was an OT who told me that?
Eg Helping plan the shopping list with you (success) - ordering alone (possible fail).
This concept underpins living arrangements & even place. Living alone, dependently (failing with cooking, shopping, cleaning) VS living with supported accommodation where these tasks are provided (success with feeding oneself, choosing menu items, arranging room items).
Does this make sense?
I think your little sentence is a winner! It can guide you well 😊
At the beginning she and daddy did not want strangers in the house. We started by saying it was just for housekeeping & laundry. They got used to their presence and now mom loves her ladies.
The caregivers do a variety of things mom enjoys especially getting her outside where she visits with her neighbors. It brings a better quality of life.
I imagine all the things you're seeing in your mom are painful reminders of the loss you're both experiencing. I wish I could relieve you of your guilty feelings. It looks like you are doing everything possible. Maybe tomorrow you won't be able to do as much. Maybe tomorrow you'll be able to do a little more. Today, you can only do your best. And guess what? That's enough.
If you can afford one (check with Medicare if your mom has it), you might consider hiring a "helper" who can spend time with your mom at home and help with care duties, like meals and meds. (This may have already been suggested.) If you introduce the hired caregiver as your "friend" who is visiting with you, it could aid in your mom's reception.
We, my Pop and I, have our first interview with an in-home certified caregiver this week. We're starting with just four hours a week. Her fees are $30/Hr.
My mom (who is in her 4th year of dementia) will help us decide what we do, but will not be the decision maker.
God bless your good heart, PennyBob.
Mom does not have the mental capacity to make decision for herself.
If you are POA YOU are the one that needs to make decisions for her that will keep her safe.
If Memory Care is not an option then 24/7 caregivers would be the other solution.
It does not matter what she "wants" it is what she needs.
You say she doesn't cook. What about the morning she wakes up and decides that she does want to cook? What about the evening she decides to go for a walk...and does not know how to get back home? What about the battery that needs changing or the bulb that is burned out and she falls from a chair or ladder...when would you find her? (although this could happen with or without dementia)
Since she has dementia you don't have to wait for things to fall apart before you make a decision. If she did not have a diagnosis and were legally able to make decisions then yes you have to wait until something forces a change.
Best of luck.
Leaving mother to her own devices at home would be giving up on her.
Going out to see kids playing isn’t going to help dementia or depression. Yes it’s good to get out of the house. But that alone is not going to help mother long term.
What you are now experiencing is not really "guilt." To be guilty you must have done something wrong. You have not done anything wrong. You are not guilty. You do feel really sad about your mother's condition and you feel regretful that you are unable to do anything to make her back into the mother that you have always loved. Try to think of your feelings about your mother as sad and regretful rather than guilty.
Remind yourself that you have done nothing wrong and that her condition(s) are not of your making. You have done what you can do. A decision to change her behavior or her reactions to her situation is not within your power. If you can manage to change your attitude toward the situation you may be able to face it with a bit more cheerfulness.
Congratulations for doing all you can up to this point. Please take care of yourself. Also know that many others share your pain in losing the mother you once knew and having to cope with this different person.
It does seem to be a small thing to simply change the words we use to describe our experience, but try it, please. You may be surprised at what a difference it can make. You owe it to yourself to do the best you can for your own well-being while trying to ease your mother's final years. Be sure to take the time to treat yourself to your own pleasures in life. Don't feel "guilty" about taking time for yourself. Feel "entitled" or "self-reliant" or "responsible" about taking care of yourself as well as your mother. Always remind yourself that if you do not keep yourself mentally and emotionally healthy that you will have nothing to give to your mother.
Good luck and hugs.
My brother, sister and I acknowledge that there is going to come a time when respecting my mom's wishes will be in conflict with keeping her safe and healthy, but we feel fortunate that for the most part we've been able to do so.
Best of luck to you.
My Mom is very lonely also. Her friends are all dead and the people who call her, she doesn't consider friends. She finds it hard to hold the phone or listen to anything they say. She cannot read because she cannot remember enough to understand the plot line. She cannot watch television because she cannot read fast enough and cannot hear distinctly, much the less put together the plot line. She doesn't get jokes unless they are one-liners. When she goes out, she cannot hear well, however, she can read a menu if it is block print and make certain decisions about food.
I moved her into memory care because "I could no longer take care of her". She was occasionally belligerent, argumentative, lying and most of all, the complaints were never ending. I hated the fact that the caregiving agency could not find replacements for a sick caregiver. In addition, she saw that I had other work to do, other than her and I wouldn't allow her to interrupt it.
My Mom gripes that she has been in Memory Care for months and has no friends except the caregivers who work there. She is correct as friendship is a 2-way street and the people in Memory Care, in general, are not able to nurture and keep a relationship. However, I can't tell her that. She wouldn't understand nor care.
However, at least she has caregivers who will talk to her. Caregivers that will listen to her and other people there that make her don't feel totally isolated and alone.
I don't feel guilty for putting my Mom in Memory Care. She has 24 x 7 ability to interact with people, instead of a moody daughter who constantly has high priority items in her life. I don't know about your social life, however, as mean as it seems, when you are with your Mom, you need to keep up that social life, whether it be phone calls, texting, Facebook, etc. Show her that you are NOT constantly available to her. Show her that you do have other things in your life that require your attention besides caring for her. I used to conduct business in the car, while I was ferrying my Mother from one place to another. A lot of the business had to do with her, however, she didn't catch on to that. She just knew I was a busy lady.
I think that once your Mom realizes that you don't have infinite amount of time for her, the other living alternatives will begin to look much better and she will begin to consider the alternatives.
P.S. It is okay to be the eating and medicine police. Try and be an exercise police too. You really want to make her think that she might be better off with other people helping her, other than you. Don't expect her to be positive. However, you can turn that around and point out that if she had other people around her, they could help her do xxx. No one could give my mother massages except the caregivers. No caregiver, no massage. By doing this, caregivers could give her something that she couldn't have otherwise.
P.P.S About the food: My Mom will NOT eat food alone. There has to be someone there to eat with her.