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My mother's mood is up & down and she has hallucinations & delusions. She is wheelchair or bed bound. I feed her, brush her teeth, suction her secretions which has become almost constant.


My mother cries and complains of being bored and is extremely distressed with her immobility. She can't read d/t eye symptoms of Parkinson's, can't concentrate on television, won't listen to books on tape. She was an avid reader and exercised daily in her day. She often refuses passive range of motion exercises or pedaling on a floor pedal. She never wants to be alone.


I don't know what to do to entertain her.



We have help 3 days per week from 10 am to 2 pm, but at this point it is not enough for me. My father doesn't want to spend more money on care.



My husband and I have virtually no time together and want to get away this summer but my father effectively avoids this topic even when I bring it up.


Sorry for the rant. I don't know what else to do.

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I have started and erased this reply several times, but I am not coming up with a better way to say this. I now this is blunt.

You are propping up their delusions of independence. Until you stop being the solution to their problems, they will not address them.

I am not sure from your post if Fear, Obligation and Guilt, FOG are informing your actions. You may want to read up on that, as well as boundaries and co-dependence.

It is not your job to entertain Mum.

It is not your responsibility to provide care.

It is not appropriate that your marriage is being impacted by your father's refusal to do what is best for Mum and either hire 24/7 care or move her into a care facility.

You have not mentioned POA over health or wealth. but as long as you are the solution to Mum's care needs, Dad is not going to open his purse strings.

What can you do? Decide how much time you want to provide support, which days, which time of day etc. Then you tell Dad, this is all I can help.

If not already in place, look into community based services, such as rides to appointments, grocery and prescription delivery, yard maintenance and house keeping. Give Dad the list and give him a week to get it sorted.

Be firm that you are no longer available evenings and weekends, that is time to spend with your husband. Book your summer holidays and write them on Mum and Dad's calendar. You do not need to discuss it with Dad, you do not need his permission, you are an adult and you are simply saying, I will be away at this time.
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nurseblanc Mar 2022
This is exactly what my sister (who lives in another state) and my daughter tell me! And I know you are all correct. Yes, I suffer from FOG (Catholic guilt). I will definitely read up on that.
My husband and I plan to discuss our summer plans with my father. He needs to spend the money!
I do worry about overnight caregivers - but that is silly too.
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I understand when you say what your parents "want".
The truth is that there may be no way for that to happen, even IF you throw yourself and your own family onto the sacrificial altar.
We all are human and have our own one life and our own limitations.
I am so sorry. Only you can decide what your own limitations are.
Currently you are enabling all of this.
Beatty, who often comments here gave me the expression : "There will be no solutions as long as YOU are all the solutions".
The time is nearing when you and your husband need to sit together and make decisions. You then have to deliver your decisions to your parents.
I am so sorry. There is no way this will be easy. Not everything can be fixed; not everything has an excellent, or even a good solution.
My heart goes out to you and I wish you the very best.
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nurseblanc Mar 2022
Thank you so much - I know this is true. The hospice chaplain is visiting today and I will discuss my Catholic guilt with her once again.

My husband and I are no longer "young" and want to enjoy our retirement - my father just tells me "I am sorry that this is happening". Also "we didn't plan on this" - exactly - they didn't plan!
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The only part of your post I can address is the continual entertainment, as I'm familiar with that. (I caregive for bedridden, low vision Mom.)
And yes, she gets bored. And, yes sometimes I spend 12++ hours a day helping her/changing her/washing/prepping meals/dispensing meds, personal care, etc.

I've learned that I'm not an entertainer. Yes, she gets bored.
Similar to you, I provide talking books & a digital reader for her.
I also bought Alexa a few months ago, and set her up with Amazon music (paid subscription) so she can listen to music anytime she wants. I paid for a News subscription so she can listen to headline news commercial free on Amazon ... etc
I try to discuss current events with her that I've read online.

Also cancelled cable (due to the cost) and installed Roku. Now, I can set her up with several hours in a row of her favorite TV series from years back.
However, she still gets bored. Sometimes she doesn't like *any* of the millions of shows that are available for her to watch. sigh

I offer her a Hoyer Lift ride to her wheelchair which is often declined.

I've come to the conclusion that I'm doing my best for her in her price range. (Free care.)

And am home if she needs me. I spend some extra time watching TV with her. Hang out with the dog in the living room next to her Hospital bed. etc

But, that will never stop her boredom and I guess that's just the way it's going to be under the circumstances.
So, yes -they get bored. And, no-we can't entertain them as much as they want. Heck, I get bored everyday doing all this stuff ...
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nurseblanc Mar 2022
Thank you so much - this is just how my mother is - I offer to find "old" movies but she just can't focus. I get bored too!
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Of course your father doesn't want to spend more money on care. Why would he when you provide it free of charge?

Plan with your husband to leave and return to your own home. Give your father 6 weeks' notice. Then do it.
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In your shoes, I would do a "social admit" to the hospital for your mother. Tell the social worker that there is no one at her home capable of caring for her.
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nurseblanc Mar 2022
My mother is currently under hospice care (but has lasted a bit longer than expected; Parkinson's is so cruel). She could go in for five days of respite care but my father won't agree to that.
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Catholic guilt my Aunt Tillies arse! 🙄 The only good thing I took out of my Catholic school education and upbringing was learning to pray the rosary, which I still do today, at nearly 65. The guilt card serves no useful purpose but to keep YOU tethered to dad and his wallet which is shut tighter than the vault of a 200 year old bank. Dad's been calling all the shots here because you've been ALLOWING him to. He says jump and you ask how high?

Its time for YOU to tell DAD how things will play out from now on. And if he doesn't like it, he and mom can move into the Skilled Nursing facility you have picked out for them. Hire an agency that can provide 24/7 and overnight caregivers immediately. On dad's dime, of course. Again, any balking and you can leave the scene entirely, your call dad.

And mom's bored!!! You can call in the Glen Miller Orchestra to entertain the woman and the moment they left, she'd be back to complaining of boredom once again! My mother was the same way. Never satisfied no matter WHAT lengths were taken! So why bother? 😐

Enough is enough, but not until you tell DAD that. Otherwise, all is well in his world and you'll be off to the hospital soon yourself with a nervous breakdown or sheer exhaustion. You're willingly being taken advantage of under the umbrella of Catholic guilt. Which isn't funny anymore and can cost you your health. Stress kills. And elders can outlive US, even with Parkinson's and other ugly health issues. My uncle George is 1 month shy of 102 and has been dying of pancreatic cancer now for the past 6 YEARS. True story.

Put your foot down and take your life back now, my friend.
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Are you under their roof, and do you easily have somewhere to go
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nurseblanc Mar 2022
Yes we moved in with them when we realized that everything was going downhill.
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I have a friend who resorted to seeing a geriatric psychiatrist because she’s been too nice to too many people who are taking advantage of her niceness. In each case these people have no nearby family. The shrink told her to look up Adult Protective Services and be ready to call them when the time comes that they can’t live alone. This friend has no legal standing (as I’m sure is the case with you) to force the people to move to some sort of adult care facility. But APS will do that if they think it is necessary. If your parents or just mother cannot take care of themselves without you, and for whatever reason you aren’t going to do it, APS will probably step in.
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