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Mom, in her mid-80s, had a stroke in early April. We are caring for her at our family home with Dad, who is in his early 90s. Dad is a fall risk (~twice per week) as his knees do not bend, and he has some cognitive decline. Dad is mostly self-sufficient (he spends his days reading the newspapers, gardening and mowing - we do cook supper for him), but he is not able to care for Mom, so we have hired caregivers for Mom, 24/7, except the weekends. My 4 sisters and I rotate coming home to care for Mom & Dad over the weekends. Of all of this, the worst part is that Mom cannot speak. (She can sing a little bit, but it is a fleeting activity - we cannot communicate with her. She does not even nod or shake her head reliably.) We take her outside in her wheelchair, but its starting to get cold outside. It is difficult to take her out in the car, as what to do if she needs a toilet? (With great persistence, we have been able to learn to understand - most of the time - which glare means "I need to use the toilet".) Mom is likely depressed, does not sleep well at night, and is always trying to get out of bed. One day, she will fall out. Even though she came home fully paralyzed on her right side, she has regained some mobility. She can (sort of) walk if you hold securely onto her. We believe that she thinks that she has no mobility issues, and can walk and do anything she wants. Mom has a feeding tube, and by mouth can only have liquids. She has an obstruction in her esophagus where solid food lodges and gets backed-up. The 2nd worst problem with Mom is her anger. She can turn on a dime, and puffs at whomever she is angry with. She punches, kicks, and pinches. She seems downright evil at these times, and there is no way to help her. She will not listen to reason, and we usually just end up walking away until she cools down. Sometimes, she doesn't cool down for a long time. Mom does like to listen to music, unless she picks up on the fact that you are trying to pacify her. She will "watch" TV, but mostly seems disinterested. She was an avid gardener and baker in her previous healthy life.

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Listen to music together, and sing or hmmmm along. Watch videos on gardening, meditation videos with soothing nature backgrounds together. Read to her; it isn't so much about understanding as about the soothing cadence of the voice when reading.
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I believe being outdoors is a balm for the soul, take her out if possible, even if it's just a walk around the block (assuming she has a good wheelchair). Audio books might work too, the ones aimed at tweens are more apt to be G rated.
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Watch TV whether she seems engaged or not. You might find something she especially likes. My mother would watch Elvis videos all day long even when she wasn't capable of anything else.
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Mary, you and your four sisters have been doing this now every weekend for 6 months, since April. Is it getting better, or worse? Are you all local, or is it extra time consuming for one or more of you because of travel? Is anyone getting to the end of their tether?

You are also hiring 24 hour carers for the weekdays. Who is paying? It’s very expensive. If it’s the parents’ money, is the money going to run out? What happens then? If you and your sisters are paying, are you prepared for this to last another 10 years? And how do you manage if a carer doesn’t turn up? Three shifts a day, five days a week, means that perfect reliability is a big ask.

I fully understand that this is not what you are asking. But perhaps you are finally posting because it’s becoming a strain for you all. If so, it might be better to look at the big picture, rather than just ideas for small improvements.
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MaryLFL Oct 17, 2023
Hi Margaret, 'Is it getting better or worse?' Mom actually has made amazing strides, the most notable being that she can "walk" if assisted, and she is mostly no longer incontinent. She was eating solid foods - it had to be cut up very fine or pulverized. Some of us got a little over-zealous, though, and she did end up getting small bits of broccoli (and other) lodged in her esophagus, so now we are allowing her only liquids/smoothies. For us kids (3 bros, 5 sis), the first few months were Hell, and being that only one of us girls lives in the same town, the travel on the weekends is a lot, especially for my sister in Ottawa, and myself in Boston. (Mom & Dad live in rural western PA.) Mom would be mortified if a male would see her unclothed, so the bros are relegated to helping with Dad, and that is okay. The bulk of it has fallen on our RN sister who lives across the road from Mom and Dad. She and brother in Pittsburgh are POAs and she is Medical POA. Our parents think the WORLD of these two siblings, and both are under a great deal of stress - mostly the sister, tho. She also has a FT job at the local hospital. When a caregiver calls out, she has had to learn to call another, to see if they can come, rather than just go across the road and be with Mom. (She still spends too much time at Mom & Dad's.) Sometimes the sister near Pittsburgh comes when caregivers call out. It is very disruptive when this happens, but we do have pretty reliable staffing, currently. 'Who is paying?' Mom and Dad, right now. The money will run out, soon. The POA brother has applied for Medicaid, and we are in the spend-down phase. It is a strain for us all, definitely. We see the big picture, all too clearly (what do you imply that we are missing/not seeing?) and we are striving to find ideas for small improvements to get us through the day-to-day. They are VERY long days. We fully realize that Mom will likely live for another 10 years like this. Her mother did. (I'll be selfish and state that one of my greatest fears/realizations is that this will likely be me, too, one day.) The real reason I am posting now is because I am driving home in a few days for my weekend shift, and need some ideas of things that I can do with my Mom when I am her caregiver. I never was ANY good at 'babysitting' (even tho I have 4 kids of my own). I figured that many out there are dealing with the same issue, and might have some good ideas. Thanks.
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With moms volatile personality I would not take her out places. The mom you used to know and love is gone, the stroke did that. I am very sorry for mom and for you and your family. Have you talked with her doctor about possible medications for the mental side effects from the stroke and violent tendencies and agitation? She is basically trapped inside this broken body now and I am sure she realizes this and part of her anger and lashing out could be from that and the other part from the damage done to her brain because of the stroke.

As for activities maybe you could setup a little in house garden for her to tend to. Like some herbs or flowers in small pots and she can sit at the table and plant them and water them? Bake with her when you visit? Let her direct where it goes and if she seems interested great and if she isn't then that's OK too.
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Have her sit in the kitchen with you and watch you bake since she loved doing that before her stroke. You can even let her do some of the simpler things even if she makes a mess.
You can play the card game War with her. I played that with my late husband who also had a massive stroke and was unable to speak much, but still knew which card was higher.
And your mom more than likely can still sing a lot as singing comes from a different part of the brain than speech.
My husband after his stroke couldn't say one word, yet when the speech therapist came in she said that she wanted him to sing the song Happy Birthday with her and he sang every single word.
So try playing her favorite songs from her younger years and you will be pleasantly surprised as she sings right along with them.
And you can just sit with her and go through old photo albums and reminisce with her.
And if she is like my husband as time went by he really just preferred to sit in his chair and watch his TV shows. He would have been very mad at me if I would have tried to entertain him 24/7.
So let her direct with her reactions as to what and if you do anything at all with her.
Best wishes.
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