An aging mother who still wants to maintain control over her disabled son. Any thoughts?
My 92 year old mother and 70 year old brother live with my husband and I. My Mom has heart issues, chronic pain and is suffering memory loss. My brother has cerebral palsy, epilepsy and is in a wheelchair. My Mother knows what's "best " for my brother but she herself does not accept that she can no longer do some things. She has fallen in April and once last month. Both required trips to the emergency room. This all happened because she refused to use a walker. The fall last month caused head injuries and 12 stitches to her skull. Now finally she goes everywhere with a walker. She controls my brother's every move and makes decisions for his food, medication, schedule etc. without consulting or discussing it with anybody. My brother's caregiver is wonderful but sees where my Mom has to be in control all the time and it is making us all very weary. We have to try to circumvent her as much as possible. My husband and I have to have private conversations with the caregiver in order to address issues regarding my brother. We know that if my my mother is aware of any issues she would make decisions which oftentimes are out in left field with her illogical thinking. She is like a dark cloud in this home. She will not ask me when she needs something.....she will go to my brother's caregiver but not me. My husband and I are at our wit's end. All she wants to do is die and she makes sure she makes it miserable for everyone else. She completely ruined Christmas this year by staying in her room all day and refused participating in any family activities. My husband and I were so disgruntled we took down all the decorations on Christmas Day since she killed the spirit days before. I am trying to get a medical home health care worker in to address her specific physical needs but we have no idea how to cope with this illogical , depressed and controlling woman who does not know the meaning of being grateful. We realize dementia brings with it drastic mood swings and host of other problems but we have no idea how to get help for her.,,,,we are tired and weary.
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Let's say the son's name is Jimmy. So you say, for example, "Jimmy loves how you fold his clothes, mom. No one can do that like you." Get her situated with some site like CarolWright.com where she can look though all sorts of interesting but cheap gimmicks (and don't give her a credit card). If she finds something that she insists on, it's like "Oh, Mom, what a GOOD idea. Blah blah." Then buy some $28 purchase, pay extra for the gift wrap and sign the card "From Mom."
Simultaneously, tell her there can't be any more annoying Jimmy's caregiver. Tell her if she keeps doing this, the caregiver will quit and there will be no choice but to put Jimmy into a home. She'll figure it out that you mean her too. The only way things stay together for long is if you want it to be long.
If she is legal POA then legally she can control him. (medial and personal, financial)
If something were to happen to your mom are you able to make decisions for your uncle?
If your mom is diagnosed with dementia what are the plans?
Personally I would begin looking for Assisted living for both of them. They can move in together, she can still care for him but she would have the help of the AL staff. If it got to the point where she needed Memory Care your uncle could remain in AL.
The other option might be Skilled Nursing facility for them, again together but they would have a higher level of care available.
By the way...personal thought here. She did not "ruin" Christmas. You let her attitude effect you and that ruined it. You could have ignored the temper tantrum and continued with your day.
I've always found when cooking for many, you can't make them all happy & certainly not serve everyone's favourite, everyday.
Caregiving for many might be similar?
Mothers & children with special I expect have a special bond/sense of responsibility. Maybe not having the step of learning to let go - like you do with rebellious teens & independent young adults.
Somehow I think I would try zone in on what's important for Mother's & Brother's care. Safe housing is no 1. But does everyone need to be all under your roof?
Or maybe you do wish to all stay together but regular breaks away would benefit? Just you & hubby. Is that possible? If not.. maybe that is something to think about? A weekend away, say every 3 months?
I'm afraid I don't know how to suggest your Mom start to let go a bit. That mix of anxiousness, need to oversee, control. It's within her.
But I can see how this behaviour is upsetting you, so it is worth trying to change things. Hopefully others will have more ideas.
Is this your home, or mom's?
If your home, these folks need to play by YOUR rules. Otherwise, they need to live elsewhere.
It sounds like are trying to placate mom and let her drive the bus. It doesn’t sound like that works anymore.
What do YOU need to change to effect a change?
Your mother has been your brother's mainstay for 70 years, and you don't agree she knows best? Now that she is becoming frail and mentally frail, you're dismissing her, with all of her long experience, as illogical and controlling.
Fortunately it sounds as if your brother's caregiver has a much better working relationship with your mother and your mother trusts her. That is a priceless blessing. Is she there all the time as a live-in, or for how many hours a day/week?
Then there's this: "She completely ruined Christmas this year by staying in her room all day and refused participating in any family activities. My husband and I were so disgruntled we took down all the decorations on Christmas Day since she killed the spirit days before."
I have lived through a similar situation: I think at the time I described my mother as a black hole of negativity, sucking everyone around her into it. So I do sympathise, I do understand and remember the hurt feelings. But responding in kind is just going to amplify the negativity; you'd do far better, especially since mother chose to exclude herself, to carry on regardless and take the opportunity to begin (or continue) the process of transferring your brother's life support system from mother to yourselves.
Is your mother afraid that you and husband will place your brother in residential care?
It sounds like you’ve got a ton of stress on your plate. I’m deeply sorry to hear that there are so many feelings of despair looming in your household right now. I know that my response may not be a perfect answer because it sounds like the tension between you and your mother didn’t start during her elder age years-this is an assumption on my part for sure.
You seemed to acknowledge that dementia causes cognitive changes, but do you fully accept what that actually looks like? When we know our mind and body is failing us, and that our family feels like we and our disabled child are a burden and disruption to our able bodied child, that will without a doubt cause feelings of depression, anxiety, hyper independence, anger, etc. I know the thought of finding more compassion is exhausting, but it is absolutely essential. The only way that she will begin to respond better to you is if you help her trust you and understand that you love her, you love your brother, and you’re doing all of this because you love them and not because you feel obligated. Your brother has clearly been your mother’s every day life task for 70 years(that’s an incredible dedication of time), and she clearly has pushed through a lot of her aging body issues if she’s lived in such severe chronic pain that she may have abused opioids to continue going on with daily life. Your mother is still a human being. She isn’t being ungrateful. She is grieving her own abilities, she’s processing a great deal of fear and she is feeling incredibly unwanted right now especially if your response was to take everything down on Christmas rather than remind her she is loved. She likely excluded herself so that she didn’t bother you. Often times, anger is only an expression of feelings of sadness and loneliness.
I’m personally having to put my own ego aside to make sure my loved one is cared for well, and part of that is meaning that I have to create a relationship of compassion with people who have deeply hurt me in my life. I do this by acknowledging two things: I am just as human as they are-so it’s ok for me to be angry and it’s ok for them to be angry, with or without reason; I am in total control of my response, and I understand that their reaction to me is a reflection of them and my response to them is an awareness of me.
My suggestions are this:
1) get a therapist for yourself
2) develop a daily effort of bonding in some way with your mother so she begins to feel like it is safe to hand over the reigns, and so she doesn’t feel like she is burdening you more.
3) develop 4 living alternative plans. Envision what it might look like and what will need to change in order for them to continue living in your household(include your own means of improvement too-not just theirs), then envision what it would look like to care for your mom and have for brother placed in assisted living, and what it would look like to put mom in assisted living and you care for your brother, and lastly what it would look like for them both to be in assisted living.
Really think these things through, do some soul searching from an objective point of view as much as possible, and each day remember that one day all of this will change. I want to leave you with the question of if something happens to her soon, how will you feel five years from now when you look back on this experience? This isn’t only your mothers creation of a home environment, you and your husband have some work to do. You have control over your response, your level of compassion and patience, as well as your perception of her actions.
I truly hope this will be of benefit, and I truly sympathize with your frustration. I hope your family finds relief soon.
I know you are doing all you can to keep the family together. If treatment from specialists does not help your situation, it may be time for your mom to move to a long term residence. Consider researching nearby assisted living facilities that transitions to memory care.
I agree with other on here, after you’ve spent 70 yrs caring for someone who is completely dependent on you, it’s hard to give that control up. But if she has dementia, she will have to. At 92, she has powered thru a lot to keep your brother up as best as she could. She has had a full life, and dementia will be making her world smaller. She needs care, your brother needs care, you and your husband need care (in the way of counseling or support groups). It’s so good you have extra help now.
If your mother went into a facility, would you still have a caregiver and take care of your brother in your home, or would he need placement as well? You have to decide what exactly you want. And that needs to be what’s best for you and your husband. You two are still capable of living life. Your mother is losing that….sounds like your brother never had that. I’m not trying to be mean, just real.
Get a diagnosis on your mother first. Then speak with your brothers Dr about his options. Perhaps, your mother can go to a facility and you could still care for your brother (w/ the hired caregiver)? Perhaps both mother and brother go into facilities. Get with their Drs first.
Take one step at a time. Explain to both Drs that your mother is a hazard to herself and therefore to your brother. Your brother is 70 and serves the same good care as your mom…he doesn’t deserve to be left to the whim of someone not thinking clearly.
And I also agree with the person who said, your mother didn’t “ruin” Christmas…you let her get into your heads (both you and your husband). Once someone shuts themselves in a room, a one time offer of “hey come one out and eat with us” (or whatever) and then forget about any further cajoling. Should’ve let her stay and you guys continue with whatever you wanted. She doesn’t have that much control…you just think she does.
I have a 32 yr old nephew who suffers from physical problems, one is cerebral palsy on one side. He also has a neurological problem.
Does you brother have any mental challenges. Is he capable of making competent decisions.
I ask because of your age. I know at 72 I will not be caring for my nephew. Right now he can live on his own. I have found resources to help him. He gets help from the state for his rent. The State provides him with a person who comes every Wed for 3 hrs to help with things he needs done. Dr. Appts, shopping, just walking in the park. There will come a time when he can no longer do for himself, at that time I will need to let the State take over his care. I am his POA, but not his guardian. At my age, I don't want that responsibility.
Your Mom has a Dementia. You need to learn to go with the flow. Your brother is her constant. The person she cared for 24/7. You cannot expect her to give up controll.
Christmas, it was probably overwhelming for her. She felt more secure in her room. You should have just gone along with your plans and enjoyed the day. What would you have done if she was a child acting this way? Probably ignored them saying "if thats the way u want to be". The child is ruining Christmas for themselves not you. Dementia has no rhyme or reason. Its very unpredictable, which is something I had a hard time with. I like order.
Since her memory may be affected, are there any opportunities to further remove visual cues or reminders about things regarding your brother's care?
I've learned the hard way that if you do a holiday with someone who's impaired you do it for yourself. We all try to meet some ideal of how we think a holiday should be, but do go into the holiday (or your day) with the assumption that dementia-driven behaviors will derail plans, and there's nothing you can do but roll with it.
This was so helpful to me in understanding why I was seeing the changes in my mom, and changed how I interacted with her to create a less stressful environment.
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
It is so very hard to be a caregiver to a mom because the dementia usually causes the mom to be oblivious to her changes (anosognosia), and flips the mother-daughter dynamic on its head. My mom moving into a dementia focused AL let us go back to a mother/daughter relationship. I had become resentful and angry of her needs and changes, even though I took pains to understand the dementia and knew she couldn't help it...I don't know that, if we hadn't done the move (which she wanted), I would have been able to hang on to as many of my 'good' memories of her.
https://www.youtube.com/watch?v=Cetf0Q566Hc
https://www.youtube.com/watch?v=QQTlQc5akEU
https://www.youtube.com/watch?v=22ZNZvN9UyY
https://www.youtube.com/watch?v=6cZTgG6kDjs
https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX
https://www.youtube.com/watch?v=br5M3s7H7l4
https://tamcummings.com/stages-of-dementia/
He is her son and he has been helpless and in need of his mother his entire life. She is not going to be able to turn that off no matter how much pain she is in or how demented she becomes... she will try to take care of him no matter how off the mark she is....
Not sure why the decision was made to move them in with you, but whatever it was is not mentioned in your posting. Help them find the right facilities for their individual needs. That is the kindest thing you can do.