How to handle a decreased ability to engage with the world?
Hi!
The backstory to save time later:
My husband and I (and to some extent, his younger brother) are the primary caregivers for his almost 87 year old mother.
She still lives on her own, makes all her own decisions, etc. The younger brother lives in the basement, but sadly doesn't engage more than he needs to.
So, my husband and I spend more time with her, help her with things she needs, etc. And she's a LOVELY human... I really lucked out in the mother-in-law area.
She never had a very big world. She was a stay-at-home mom, and, from what I've learned over the years, a very traditional and somewhat submissive wife to her husbands (my husband's father, and then a second husband - both long dead). Even once the kids were grown she pretty much took care of her husband/the house, babysat her grands every day, and knitted, She went out once/week to bowl, grocery shop, and go to the bank if banking needed to be done. That was pretty much her life.
And when the bowling league left the area, her world got smaller. And when she surrendered her keys, it got smaller again (not in where she WOULD go, but in that she COULD go on her own if she wanted to).
She patently refused to learn to use tech, so her world is even smaller. I handle anything she needs (making deposits to her bank accounts, paying bills online, etc) because she doesn't want to go in person, and I honestly don't want to have to schlep her around for things I can do online.
Now, she really doesn't want to go anywhere out unless she has to. Her life outside the house includes doc visits and bi-monthly pedicures to keep her feet healthy. She won't go out to lunch or dinner. She won't take a day trip with us. She really just wants to sit and watch TV, and engage with people if/when they visit her.
And all of that is what it is, but here's the question I need help with.
She wears hearing aids, but they don't seem especially good, and that's even more true when she has to talk on the phone. She won't consider getting better ones. But that means she has a hard time on calls. Speaker phones are worse for her.
Recently, one of her CD matured. She needed to talk to the bank to figure out what she wanted to do with the money. That was something we could do by phone, so I went over to her house to facilitate that.
I called the bank, and Elton asked to talk to Mom to make sure he could talk to me. All he asked her was her name and her birth date, but she clearly had a hard time understanding him. All of this was harder for her, too, because he had an accent.
We got through it, but I can see the day coming when even doing that will be impossible for her.
Do any of you have experience with this?
Whether it's the bank, or the county, or Social Security, or anything else, what's the best way to navigate helping her communicate when she is the one in charge of her own life?
One more note - her life is well set up legally. My husband has limited power, and could do things like talk to the bank, but she doesn't want him to, because she wants to do it.
And as small as her life is, I really don't want to make it smaller if I can figure out how not to.
Thanks for anything you can share that's helpful.
14 Answers
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Cognitively not understanding and why it is important - for her welfare - to either get what she needs medically and/or allow someone (you, son) to handle / assist with current needs, i.e., finances.
If she is unable to understand these needs, then she needs to be evaluated for dementia / 'forgetfulness,' by an (her) MD. Once MD documents she is no longer able to manage important areas of her life (whether hearing and refusing a hearing aid - which will continue to cut out outside communications) someone in the family will need to take on legal responsibilities.
MIL will not be happy.
It is very hard for an older person to change when they have been independent all their life. They both are fearful of losing their independence as much as they continue to believe they can manage their own life, even when contrary to present circumstances indicating otherwise.
It is to be expected that she will resist.
It is important that family members are on the same page - knowing that she needs assistance for her own welfare (i.e., the CDs, for instance). She cannot 'do' these things any longer, and she will likely continue to say she can and/or not acknowledge (accept) that she cannot and needs help.
Example is Banking-she doesn't want son to do, she wants to. Yes, she always will want to.
Do not give in or feel intimidated by her stance.
Expect her to say 'no,' and resist the help / support she needs.
Her needs will only progress.
Make sure you / family have legal documentation in order.
Make MD appointment to have her assessed for dementia.
Never ever argue with her.
She will always 'know' she is right and you are wrong.
In her mind, she is fighting for her life / independence.
These transitional periods are difficult and most family members do not know how to manage / handle. It is all new - to everyone. Read Teepa Snow's website, books; watch her webinars.
Her world doesn't have to get smaller due to having the support she needs. It is a matter of filling up the time with activities, perhaps volunteers, setting up You Tubes or movies she can watch.
When she fusses, do not take it personally.
Her responses are to be expected (makes it easier to respond when you know what is coming) as are her emotions.
You (your husband) do not argue with her. You keep her as calm as possible and then do what needs to be done 'anyway.'
Invite new people into her life as you can such as college students in a master's geriatric or counseling program, or an art student - whatever she is interested in. Introduce them as your friends. Slowly integrate new people into her life.
Gena / Touch Matters
She often says she feels like shes going to pass out, even though she never has and no doctor, GP, Cardio etc. Have found a reason to suggest it might happen.
If she does go out (just threw her a surprise 95 bday party outside the home), she refused to eat or drink anything because she didn't want to have to go to the bathroom.... not as an incontinence thing, but I think just the fact of doing so in unfamiliar setting, w/o the convenience of assistive aids present in the home.... e.g. raised toilet seat, etc. Many places do not have modern ADA compliant chair height toilets....
And another thing, if there is any dementia going on..... she may be embarrassed that she can't recall names or faces, etc. My mother is. She apologized the whole party for not recognizing people. But she also thanked everyone for the amazing gift of showing up to celebrate her milestone.... which made the whole adventure worthwhile imo, despite the battle to get her to agree to go.... (surprise party).
And so yes, my mom also refuses to go anywhere most of the time.... even to the doctor..... and few come to visit or call, and she has horrible hearing and refused aids, and now would not be capable of caring for/using them. But she is satisfied with that. I occasionally override her objections and get her out for some event, and I have always received a 'thanks for taking me' afterwards.... but not everyone is comfortable doing that.
I've become mostly a homebody which is somewhat of a change for me. I used to volunteer. I went out shopping and walked 1-2 miles/daily until about 2 years ago. I still go to the grocery store 2X/week, sometimes more. I will definitely miss being able to drive when/if that happens, even though we (me and my 96 Y/O spouse) have a lot of essentials delivered which is a huge help. I use tech daily although I'm not great with cellphones and all the "apps".
As long as I can continue without becoming a burden, I will. However, I definitely understand how the world of an old person shrinks. Mine has, mostly due to encroaching physical limitations and chronic pain.
I worry about it sometimes, like when I have to go out of town. I used to worry about it more. But now for the most part, I remind myself — her life, her choices.
They have a screen that your MIL can read what is spoken to her.
She responds just like a normal phone.
As far as I know these phones and the service are free for those that qualify for the service.
the qualifications are...
Have hearing loss
Live in the USA
Read and speak English
Have internet service
Her world is getting smaller, and it doesn't seem to bother her. It's only bothering you because you have a different life perspective.
She is getting older, and everything is going to become more difficult for her. She will probably adapt. It sounds like she has a great support network.
Many hearing aids - good ones - are problematic and cause major difficulties.
She does have a good support network; she is very fortunate. Gena
She may be nice and all that, but she's shooting herself in the foot by refusing to use technology. That refusal is making a huge and growing problem for you and husband. It isn't nice to burden others. But you're accepting it, so that's great for her. If you didn't, what would happen to her? I wonder.
Hearing loss is definitely a great contributor to cognitive decline, a/k/a dementia. Does she know that? Do you and husband know about that? If not, do look it up and understand exactly what you may be in for. Visit a few memory care homes and observe the state of those who are in them (one may be my husband). That's what's ahead for MIL. But maybe it wouldn't have to be.
The least of your problems is her shrinking world, which is often what happens during the early part of cognitive decline. They realize they are having trouble coping and stay where they feel safe. I'm so sorry you're dealing with this, and I wish you the best.
Hearing aides can only do so much. They do not bring your hearing back 100%. My husbands problem is not the need for volume, he can't understand the words. No matter how high you turn his hearing aide up, he can't understand the words. He has lost hearing in one ear and is considered profoundly deaf in the other. Nothing more hearing aide wise they can do for him.
The thing with the digital, is sounds are more mechanical sounding. My husband did so much better with the analog. The sounds were truer. He has a special phone he uses for the hard of hearing. Phones have to be hearing aide compatable. Your cell has to be set for hearing aid. Speaker usually distorts. I have great hearing but cannot use speaker on my phone.
Yes, get her to an audiologist. Someone go in with her.
She may need some tweeking. Volume range is set by a computer. Her aid may have wax in the tubing. This will cause problems. Her mold may not fit correctly. As they age they get harder and shrink. My husband sees his audiologist at least once a year.
If she doesn't have a PoA, this is going to become a crisis once a decision is made to either hire extra help or transition her into a facility so that you can get your lives back. This needs to happen before she further declines. You need to make this a condition of continuing to care for her. You don't wait for buy-in as you know it's not going to happen. Just keep moving the ball down the field, using therapeutic fibs if/when necessary.
I'm happy she was such a great MIL to you. Bless you for helping her. May you receive wisdom and peace in your heart as you continue to help her to make future care and decisions easier.