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Old 11-18-2019, 04:37 PM
  #1

So, my mom has had every medical issue under the sun, and has roped my bro, father, and I into doing everything for her. Example: during a 3 week hospital stay, she made each of us take turns sleeping in her hospital room at night.

She has an autoimmune disease that has progressively gotten worse. She is currently in acute rehab but is being discharged because what she has is a chronic illness. She is not improving.

She canít stand and can no longer feed herself. We will be getting an electric lift and hospital bed at home. She will need 24 hour care. Dad thinks he can take care of her at night. He is so frail and keeps things bottled up.

I have depression and anxiety. Iíve been taking days off of work just to sleep all day. Itís going to change all of our lives and Iím resentful. I miss my free time. Iíll probably be spending all my Thanksgiving break at their house, helping.

My therapist is out of town and Iím struggling.


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Old 11-18-2019, 04:44 PM
  #2

I would be finding an assisted living facility ASAP. That level of care is beyond most families' abilities. You're so exhausted that you are calling in to work to sleep? That is just not sustainable, hon.

I am so sorry. I know how fraught with emotion (aka guilt) this topic is. If you weren't looking for opinions/advice, then skip the big chunk preceding and know I am sending you a metric sh!t ton of hugs.
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Assistive care
Old 11-18-2019, 04:52 PM
  #3

My mom had awful experiences at two skilled nursing facilities. She said she would go on a hunger strike if we put her there.
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Old 11-18-2019, 04:54 PM
  #4

Iím so sorry! Thats just a terrible situation all around!

And ó ditto what Zia said!

<<a zillion hugs>>

Hang in there!
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Assistive care
Old 11-18-2019, 04:59 PM
  #5

My mom had awful experiences at two skilled nursing facilities. She said she would go on a hunger strike if we put her there.


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Old 11-18-2019, 05:05 PM
  #6

Is she at the point where she could use hospice?

And truthfully, if she is that needy, then she needs to go where she can have 24 hour care. If she wants to hunger strike, then so be it.

Sometimes you just have to throw in the towel and family needs take over the needs of the ill. You guys can't kill yourselves taking care of her.

Is your dad's finances in any position that he could hire someone a couple of days a week for a night time shift, or during the day so he/you could have some time off? If there is any way, I would do this.
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Old 11-18-2019, 05:07 PM
  #7

Okay, I get that. And, if I recall, your mom is a bit prone to being dramatic? Though, given her medical issues, I would be, too!

Then home health care around the clock? I mean...you can't be up all night and go to school, nor can you keep taking days off to sleep. I stand by my statement that this is not sustainable. And it doesn't sound like your dad is capable of giving her what she needs. I really don't think any one person is. There is a reason nurses only work 12 hour shifts.



My heart breaks for your whole family.
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Old 11-18-2019, 05:11 PM
  #8

This is what concerns me the very most:

Quote:
I have depression and anxiety. Iíve been taking days off of work just to sleep all day. Itís going to change all of our lives and Iím resentful. I miss my free time. Iíll probably be spending all my Thanksgiving break at their house, helping.
You HAVE to take care of yourself. You know the trope, can't pour from an empty pitcher, etc. I'm worried about your well being, too.
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Old 11-18-2019, 05:50 PM
  #9

I'm so sorry. This situation really sucks for all of you.

Unfortunately, your mom is apparently not going to improve and needs a great deal of care. Your father does not sound strong enough to physically care for her, although I'm sure that there are many things he can do for her (companionship, for one). You cannot be her care giver because you are working full-time (probably need the income) and you are prone to anxiety and depression.

It's time to set some boundaries for caregiving. Figure out what you are able to do for your mother and still keep healthy yourself. Maybe you can spend two hours with her twice during the week and one afternoon on the weekend. Or maybe you can come three times a week to help her get washed up, changed, and into bed. Whatever it is.

There should be a social worker or discharge planner at the rehab facility who can help the family figure out what care will be needed. Then list what you, your brother, and your father are able to do. After that, the other things will need to be done by someone else--either hired caregiver in the home or staff at a health care center.

My guess is that your parents are not being realistic. They know what they want--for your mother's health to be restored--and it's not happening.

You will need to stay firm, gentle, and loving. "Good night, Mom and Dad. I love you. I'll be back to see you Thursday at 4:30, but I have to get home now. Bye." Then leave.

PRACTICE your lines. Stay firm. Yes, it truly sucks.
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Old 11-18-2019, 05:55 PM
  #10

I echo assisted living/nursing home.
Looks like things have come to the point to where it is going to be the best decision for her and the rest of you.

Her illness and need for 24 hour care can no longer fall on family members. If you continue, you all will become ill.

It looks like you are going to have to be the one to set things in motion.
You are not giving up on her care, you are going to be making sure she gets the care that can only be provided in a setting other than at home with only family members taking care of her.


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Old 11-18-2019, 06:01 PM
  #11

Just as a bit of info- we had hired people to care for my Mom at home after a pelvic fracture. Siblings and I are all an hour away. I learned a few things ->A hired caregiver cannot always dispense medication. Food preparation might mean warming up things -not preparing what your Mom would enjoy. Cleaning varied from person to person. It was not cheap and my Mom was not happy having people in her home.

Just a few things to think or ask about.

I wish you luck and am sending you hugs and strength!!
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Boundaries
Old 11-18-2019, 06:19 PM
  #12

Previous posters are right. You can't do everything, nor can you continue to miss work. Your mother is being selfish by demanding that she be taken care of in a manner that will cause you incredible stress and is well nigh impossible to do. Tell her you love her but you cannot do things just as she wants. She has needs that can best be taken care of at a professional facility or by a visiting nurse. Don't give her a choice. Set healthy boundaries, and don't back down.
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Old 11-18-2019, 06:36 PM
  #13

Two choices:

Assisted living style environment and deal with the temporary fall out.
In home health care or hospice.
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Old 11-18-2019, 07:26 PM
  #14

I won't repeat the good advice, but I would contact hospice and see what they can do. If nothing else, they have a lot of resources that they can point you towards in order to find the best situation for all of you. Your family cannot take the entire burden - it isn't sustainable for anyone.
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Old 11-18-2019, 07:50 PM
  #15

Nobody WANTS to go into assisted living or nursing facility, but sometimes it has to be done. Does the rehab facility have a social worker who could help? Hospice can be really fantastic. They have in-home, in-hospital, and respite care. They also have a lot of good services for families.

Typically they work with people expected to live 6 months or less. However, my mom renewed with them twice. After her third renewal ran out and she was doing well, she was switched to palliative care, which is also great.

Take care of yourself, and donít fall into the guilt trip.
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Old 11-18-2019, 08:52 PM
  #16

You are in a really hard place. Mom does not want a skilled nursing facility, no one does, but that is what she needs. Assisted living is not suitable for a bed bound patient who cannot self feed.

If Mom is coming home, talk to the rehab social worker to see what help your dad can get. A bed bound patient is really hard to care for at home. He will need all the available help (home aides, meals on wheels, home food delivery, prescription delivery, etc) to do so. And even then it may not be enough.

Take care of yourself. Do what you can, but don't be afraid to say that you can't do some things. Your dad is agreeing your mom's desire to come home (basing the decision on desire not reality), but that does not mean you turn from daughter to servant.
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Old 11-18-2019, 11:32 PM
  #17

I already wrote a long post and deleted, suffice it to say I'm a fellow stressed out caregiver.

You've gotten good advice so I'll second a few points.

*Boundaries. Protect yourself from caregiving overload.
*Protect your dad from overdoing and creating even more problems
*hard decisions cant always be based on wishes.

I'll add a few points.

*Some failure may have to happen in order to force the hard decisions.
*its okay to push an unpopular option if you know in your heart it is what is right. The parent child roles are switching and you are showing love protecting them.

I have felt like a bully at times, but ultimately I have to protect my loved ones and that has often meant pushing unpopular but necessary decisions.
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Old 11-19-2019, 03:58 AM
  #18

If she can afford it, I would give her two choices:
- nursing care facility or
- 24 hour home health care.

That's it! It is not a choice to have no help.

That's it one or the other. My dad did not get along with home care but when he had to go to rehab for awhile he really hated that. We gave him a choice- either get along with the 24 hour caregivers or be in a nursing facility.

My mom is also at home, can do a few things, but is frail. He now manages to get along with the caregivers. The caregivers take care of bathroom needs and baths, helping him dress, uses the lift to get him in out of bed, etc... They also talk to him throughout the day and keep him company. The caregivers do not dispense medicine. My sister sets it up for the week, but they can remind him to take his medicine. They will make simple meals and do light housekeeping. It did take awhile to get good ones. With your dad around and 24 help, the stress will maybe less.
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I am my Dad's primary
Old 11-19-2019, 01:09 PM
  #19

Care giver. It took me a full year to demand every other weekend off and every Wednesday afternoon and late night off. I still do too much and received sporadic and small pay. I have lost a year's worth of wages so far.

I happen to enjoy where I am living. I happen to find satisfaction and joy in taking care of my chair bound nearly 99 year old Father. I have few bills but i am not adding to my nest egg...

The interesting part for you I think is that my Dad has 7 children. My brother takes every other weekend
1 sis will fetch dinner and sleep here when I am away Wednesday night, but i do all direct care on Wednesday...

I have 1 sister who might bring Dad a sandwich from time to time. I have 1 sister who hot Dad up for the day once. She will also come by and work from Dads dining table if I need her. I have a sister that despises my Dad, she will help him but is very resentful and unpleasant. We are glad she left as she was living here. My last and 5th sister lives farthest away. She visits periodically throughout the year, has done cooking n cleaning and a little direct care, maybe 5 days total so far altogether.

So you see, out of 7 children 2 help a lot and most do very little.

You are NOT obligated to step up...nobody is indispensible...
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Old 11-20-2019, 07:33 AM
  #20

I'm so sorry. Prayers and good thoughts are being sent your way! I don't know what you'll do then and even with certain solutions, what will the costs
be?

I worry how things will go when my mom can no longer care for herself. And I'm an only child so it will be all on me.
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