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Caring for Mother: She doesn't trust my care. Suggestions?

Posted by Leonard @jakedduck1, Jun 12, 2019

<p>It’s only been about two months since my Mom fell and broke her shoulder. The problems started 4 days later when her hand and elbow became contracted and she became fearful of standing, walking, being pushed in a wheelchair, riding in the car, scared of the dark. She is scare of everything. All of a sudden she’s lonely, she wants me to sit in her room all night. She calls me all the time starting 30 minutes after I put her to bed. “Are you awake,” when she asks if I’m awake she doesn’t wand anything just wants to know. “What time is it,” she has a clock a inches away. “Is it morning?” “Can I get up” 2, 3, 4, 5, 6am “I’m thirsty, hungry, uncomfortable, adjust my pillow, open the window/door, I’m hot/cold. When I walk with her she screams out “SLOW DOWN, YOUR GOING TO FAST... we are stopped, not moving at all or “I’m falling” or “I’m going to fall.” It NEVER stops, NEVER. My Dad was paralyzed from the neck down and was more independent and he had total confidence in me. My Mom doesn’t trust me at all. She was independent prior to the fall and now she’s totally dependent on me for everything. Under the best of circumstances I seldom sleep. I’m often up for days. Good thing I guess. But I can’t keep this up. I don’t know how to get her to trust me. I don’t mind doing everything that needs doing, well cooking and cleaning isn’t at the top of the list but I keep us alive and the house hasn’t been condemned. So I suppose my question is, is she being reasonable?<br />Thanks,<br />Jake</p>

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 19, 2019
In reply to @jaeterese "Having been taking care of people many many years, and this is the hardest part. I..." + (show)
@jaeterese

Having been taking care of people many many years, and this is the hardest part. I have seen it often enough to see some similarities. Here are a few. Someone becomes ill, they don’t know what’s happened. Like being in an earthquake. The ground under your feet should be stable, but it isn’t. They are scared and confused. But we don’t like to show those feelings because they make us seem vulnerable. So, we replace them with other things, often, anger, especially directed to the only person we see, the caregiver.
When an animal is injured, it attacks. It knows it has little defense so it tries to scare off anything getting close.
Sometimes, we do something like that, too.
The hardest time I had was caring for my Mom, who would loose it and accuse me of trying to kill her. Now, she knew that wasn’t true, I knew it wasn’t true, but it still hurt. Fortunately for me, my Dad was always there and he could calm her down.
But what about you? Well, perhaps just a warm hug, change the subject, put on soft music, go out in the sunshine. Have an ice cream sundae. Look at old photographs. Do her hair, every woman likes that, or manicure her nails. Even have someone come in to do her nails. Buy new sheets and pillows. Use perfume. Buy pretty soap.
Somehow, replace the drudgery and work with something light.
One thing I did get from Mom was she would say “ Enjoy the little things in life, because when you look back on it, they were the big things after all.
Let me know how it’s going, and you know, I never regretted anything I did for my family, no matter how hard it was.

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You make some good points, @jaeterese I know in my wife's situation her neuro-oncologist told us often times a patient will lash out at family and their caregiver in particular since that is the only person they feel truly safe with, so they can show their real feelings and fears.

I like you idea of doing small things for our patient! Those are some good ideas! I would only caution that these may or may not work for everyone. In my wife's situation she could not tolerate the interference of any noise at all, such as music or tv. Likewise an change in her routine or 'favorite items' caused serious anxiety to set in. As my grandfather used to say 'to each his each'!

Plus you are right -- it's the little things that count!

Strength, courage, and peace!

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 20, 2019
In reply to @jakedduck1 "@becsbuddy Yesterday I noticed I had flat tire. Had two nails in it. I called auto..." + (show)
@jakedduck1

@becsbuddy
Yesterday I noticed I had flat tire. Had two nails in it. I called auto club and when he arrived his lug wrenches didn’t fit. This was a first. Also the wrench that came with my car didn’t fit??? So out comes a tow truck for a trip to the tire shop. Later the phone rings, tire can’t be patched, ok new tire. Then my Mom shrieks, “I cant stand up, and down she goes so I call 911. The paramedic says she has a UTI, Doc orders Antibiotics and I don’t have a car and can’t find anyone to pick it up. Tire shop calls, I need to send you a picture of your new tire, it’s not fitting right.
Insurance company calls, emergency grievance filed Fri not valid so file another one. That was the afternoon bad news, I’m not up to going over the morning bad news. I’m not going to answer my door or phone and pretend everything is fine.
Later,
Jake

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@jakedduck1 Why is it that crazy things always happen to good people? Especially those who are working hard and doing their best! Guess there’s no answer.
But, can you tell me more about Mt. Shasta? What about it makes it so special? I looked up a photo and it’s beautiful, just like ours in the Rocky Mountains.
Also, have you been able to make any appointments for you and your Mom?

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1 reply
Leonard | @jakedduck1 | Jun 20, 2019
In reply to @becsbuddy "@jakedduck1 Why is it that crazy things always happen to good people? Especially those who are..." + (show)
@becsbuddy

@jakedduck1 Why is it that crazy things always happen to good people? Especially those who are working hard and doing their best! Guess there’s no answer.
But, can you tell me more about Mt. Shasta? What about it makes it so special? I looked up a photo and it’s beautiful, just like ours in the Rocky Mountains.
Also, have you been able to make any appointments for you and your Mom?

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@becsbuddy
I think all this bad luck comes my way because I eventually manage to handle it. Although there seems to be a lot of bellyaching along the way. My tire situation cost $1200.
Now she can’t stand. Very hard to transfer now.
Some good news though, I asked for occupational therapy for her arm, hand & wrist and it was denied twice but I persevered and heard yesterday we lost our first appeal but won our second appeal so she has appointment Monday afternoon. I will try and get her more physical therapy then. As it stands now I can’t get her in the car. We will probably have to take a wheelchair taxi. Her doctor is being a jerk. He ordered OT that was denied them refused to order it but the therapist got him to reorder it. I thought doctors were suppose to help patients. He won’t give me prescriptions for some equipment either. I’m willing to pay for it myself so I can’t understand his reasoning.
I’m off to dermatologist now. No more bad news I hope.
Jake

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 20, 2019
In reply to @jakedduck1 "@becsbuddy I think all this bad luck comes my way because I eventually manage to handle..." + (show)
@jakedduck1

@becsbuddy
I think all this bad luck comes my way because I eventually manage to handle it. Although there seems to be a lot of bellyaching along the way. My tire situation cost $1200.
Now she can’t stand. Very hard to transfer now.
Some good news though, I asked for occupational therapy for her arm, hand & wrist and it was denied twice but I persevered and heard yesterday we lost our first appeal but won our second appeal so she has appointment Monday afternoon. I will try and get her more physical therapy then. As it stands now I can’t get her in the car. We will probably have to take a wheelchair taxi. Her doctor is being a jerk. He ordered OT that was denied them refused to order it but the therapist got him to reorder it. I thought doctors were suppose to help patients. He won’t give me prescriptions for some equipment either. I’m willing to pay for it myself so I can’t understand his reasoning.
I’m off to dermatologist now. No more bad news I hope.
Jake

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@jakedduck1 I’m so glad you got an appointment with OT! They can help with so much! Does your area have a transportation program for seniors? Look into that. Also, ask the OT if she recommends help with lifting and moving your mother. She can maybe make a professional recommendation to the doctor. Ask if a “Hoyer lift would be helpful. It’s a sling-type chair that helps lift a person from bed to chair and back again. Easy to use, safe, and saves your back. Let us know how the appointment goes, will you?

REPLY
Leonard | @jakedduck1 | Jun 20, 2019
In reply to @jakedduck1 "I’ve been thinking about her seeing a gerontologist. Is that a specialist or a primary care..." + (show)
@jakedduck1

I’ve been thinking about her seeing a gerontologist. Is that a specialist or a primary care physician for the elderly. I’m concerned if she goes to one and it doesn’t work out how receptive will her current doctor be in taking her back if the gerontologist is a primary doctor.
I know she is scared. She keeps saying “I can’t” every time I try to get her out of bed or her chair. She leans way back instead of leaning forward. I show her by sitting and bending as far forward as I can showing her how I don’t fall. I took a few videos of her trying to get up and how as soon as I hold her to help she leans way back. I try to explain it is to hard on me to lift dead weight and instead of trying to do it like I show her she says “I don’t want to hurt you. Cant we hire someone. She doesn’t seem to understand if she gets up like that it’s going to be hard on anyone helping. Does she need to see a Psychologist?
Jake

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@becsbuddy
Hi
I already asked, doctor refused. I’ll just buy one if I can without prescription otherwise I’ll borrow one from Society for the handicapped. That’s where I donated all my dads equipment.
Jake

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2 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 20, 2019
In reply to @jakedduck1 "@becsbuddy Hi I already asked, doctor refused. I’ll just buy one if I can without prescription..." + (show)
@jakedduck1

@becsbuddy
Hi
I already asked, doctor refused. I’ll just buy one if I can without prescription otherwise I’ll borrow one from Society for the handicapped. That’s where I donated all my dads equipment.
Jake

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Hi @jakedduck1 From personal experience I would suggest you do a fair bit of homework before investing in a Hoyer lift. We finally had one through hospice that was quite solid and well built. However along the way we encountered several cheap, to me unsafe, rickety, varieties, which I truly believed were downright dangerous. A lift chair often can be of help at these times as well. We also found that an adjustable hospital bed was a huge help in helping to manage transfers.

Continued good luck with your insurance appeals as well! When I tallied up all my wife's bills, etc. over her years of being sick I found I had appealed on average three times on every one!

Keep up the good fight!

REPLY
1 reply
Leonard | @jakedduck1 | Jun 20, 2019
In reply to @IndianaScott "Hi @jakedduck1 From personal experience I would suggest you do a fair bit of homework before..." + (show)
@IndianaScott

Hi @jakedduck1 From personal experience I would suggest you do a fair bit of homework before investing in a Hoyer lift. We finally had one through hospice that was quite solid and well built. However along the way we encountered several cheap, to me unsafe, rickety, varieties, which I truly believed were downright dangerous. A lift chair often can be of help at these times as well. We also found that an adjustable hospital bed was a huge help in helping to manage transfers.

Continued good luck with your insurance appeals as well! When I tallied up all my wife's bills, etc. over her years of being sick I found I had appealed on average three times on every one!

Keep up the good fight!

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@becsbuddy
Well the good bad news continues, well maybe not but I was concerned about a spot on my arm but he said not to worry about it. He ended up freezing virtually the top of my head off and did some biopsies. Oh well, good news or bad I’m ready for it, lol. I took my Moms watch in to be fixed. The jeweler said nothing was wrong with it, he didn’t mention what he thought was wrong with me but I can imagine. How embarrassing.
Jake

REPLY
vickys | @vickys | Jun 20, 2019
In reply to @jakedduck1 "@becsbuddy Hi I already asked, doctor refused. I’ll just buy one if I can without prescription..." + (show)
@jakedduck1

@becsbuddy
Hi
I already asked, doctor refused. I’ll just buy one if I can without prescription otherwise I’ll borrow one from Society for the handicapped. That’s where I donated all my dads equipment.
Jake

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A thought...local MDA Association folks may have equipment that can be borrowed, and any purchases might be deductible at tax time....

REPLY
2 replies
Leonard | @jakedduck1 | Jun 21, 2019
In reply to @vickys "A thought...local MDA Association folks may have equipment that can be borrowed, and any purchases might..." + (show)
@vickys

A thought...local MDA Association folks may have equipment that can be borrowed, and any purchases might be deductible at tax time....

Jump to this post

@vickys
Hi Vicky,
Thank you, I hadn’t thought of that.
Jake

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 22, 2019
In reply to @vickys "A thought...local MDA Association folks may have equipment that can be borrowed, and any purchases might..." + (show)
@vickys

A thought...local MDA Association folks may have equipment that can be borrowed, and any purchases might be deductible at tax time....

Jump to this post

@vicks That's A great idea! I know down in my area there is a private group that loans out all types of medical equipment at no charge or donation $$ only. My husband donated his knee scooter and a good pair of crutches to them.
Ginger

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