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Hello All:


My Mom went into a hospice facility yesterday, under Active Care, for congestive heart failure and dementia. I had called her doc the day before to let him know of her current health challenges and me feeling like I'm going to collapse taking care of her. (She has lived with my husband and me for 13 years. She developed the dementia with hallucinations a year ago.)


She is now begging me to get her out of there. I know I no longer have the energy and stamina to wait on her all day and not sleep when the hallucinations start at night.


Am I wrong to reconsider and bring her back home again and ask the memory doc to sedate her enough to be more manageable. It's the guilt setting back in because she doesn't like the food, the bed is hard, etc. I am finding it difficult to leave her in hospice while I try to get healthy and well again. What's better for her, being a zombie on meds and coming back to me or torturing her with an environment that is making her so unhappy?


I do feel I need to have a healthy life again but I am struggling with making it at her expense. She is 92 1/2. I am 64.

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I disagree with the sentiment of your last paragraph. Please think of this differently. You’re not choosing to be healthy at your mother’s expense. “Happy” is over for her, it’s not coming back no matter where she is. I’m there with my dad, life has simply become too hard at his age and with his problems that have no fixes, happy isn’t achievable any more. It’s sad, but the fact remains. You’ve not tortured your mother, you’ve found care for her with professionals that are trained to care for her. She’s blessed to have you, whether she can ever acknowledge that on not. Don’t listen to the endless loop of complaints, it changes nothing and only brings you both down. Keep the conversation pleasant, it will benefit you both. When it becomes negative and complaining, step away, get off the phone. I wish you wellness and peace
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Harpcat Jun 2020
Excellent answer!!
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News flash!! What you were hearing from your mother is no different than what most of us have heard from our parents when they go into a facility. They hate it, they want to move, they hate the food etc. etc. I would not move her back to your home. you now have her where she can get the care she needs and you can get the rest you need. Why do you feel guilty? That’s what you need to ask yourself. Do you really think bringing her home is going to solve anything? Your needs are also important. Your mother’s needs are being met at a hospice facility where she can get the kind of care she needs and you can just be her daughter. I would strongly urge you to reconsider not bringing her home. Lose the guilt!
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Your mother is where she needs to be, receiving 24 hour professional care. You cannot replace that, she is in better hands where she is. She is no longer herself, but if she were of right mind she would not want you to feel guilty and sad. Parents don't want to be burden to their children, but by the time it happens they are usually no longer themselves.
I'm so sorry you're going through this. I know it's a very difficult time for both of you. Hospice should have a social worker for you to speak with. I wouldn't have made it through my father's hospice care without the social worker. Please please be gentle with yourself. You are a good daughter. Hugs to you.
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One day is not enough time for her to adjust. Not saying she will entirely. They always want to go home. But Mom will get the care she needs there. You are aware you can't do it anymore. That's OK. Let others care for her now. She will be kept comfortable. It is what she and you need.
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Ladybug518 Jun 2020
You are absolutely right. We need this. I need to LIVE now. Thank you!
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I'm so sorry you are going through such an ordeal; you surely do not deserve this guilt trip after devoting 13 years of your life to caregiving. You are no longer in the position to care for your mother who has too many issues and needs more help than you are capable of providing her with. Period. I am sorry mother, but my health is in jeopardy now and I am under doctor's orders to stop the care giving role.

You are not making this decision 'at your mother's expense.' You are making a decision based on the reality of the situation which calls for more care than you can provide her.

My mother is 93 and living in a Memory Care ALF (in care since 2014) and lately, she keeps mentioning how she has 'her bags packed' and how she's 'ready to leave' because there's 'nothing wrong with her' and the same goes for her friend Carolyn. They 'don't belong' there. Well, mother, I cannot even GET YOU up the stairs INTO my house since you are wheelchair bound, plus you have entirely too many issues for me to handle at home; I simply am not qualified. That is what I tell her every time she brings the subject up.

And lately, I find myself cutting down the time I spend with her on the phone due to the guilt trip she feels the need to lay on me. I don't deserve it. I will be 63 next month and have enough health issues of my OWN to deal with, never mind taking HER in! Not. Gonna. Happen.

You've done enough, my friend. Let your mother adjust to her new environment and pick ONE time each day to check in with her by phone. That's plenty.

Good luck!
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Ladybug518 Jun 2020
Thank you! I do feel I've have gone above and beyond to care for her a long, long time. Since I do love and respect her so much (pre-dementia), it made me so sad about this decision, to see and hear about her unhappiness. I spoke to a therapist this morning and a social worker at hospice. I feel much better now and know I did everything I could and I have to take care of myself now.
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Ladybug518, it took me several years to realize that my parents [in their 90's and still living in their house] were viewing me like I was still in my 20's and 30's with a ton of energy. Well, that ship had sailed decades ago.

I had to learn to say "sorry, I can't possibly do that" over and over until it became second nature.

The only time my parents had backed off was when I fell and broke my arm. Wearing a sling was a great visual prop :) So is walking with a cane. I remember one time my parents and I going into the doctor's office, all three of use with canes [for me it was pinched nerve in my back].

Now, here is one thing that will make one stand up at attention.... up to 40% of caregivers taking care of a love will die leaving behind the love one they were caring. Then what? If there are no other relatives to help out, the love one would be placed in senior living.
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Ladybug518 Jun 2020
Thanks for your reply. I did feel I would collapse and die a couple days ago before she entered hospice. It was very scary. She was lucid for a short time last week when I tripped and fell in the living room. She was so sweet and kind to me, like her old normal self, trying to help me. An hour went by and she was calling me and demanding help. She had forgotten I had gotten hurt. I guess there is no winning when dementia is involved.
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Part of her dementia is that they literally no longer care at all what they put their families thru. So there is no awareness that she is slowly killing you. There are often not even thanks. It becomes necessary to stop expecting any of the behavior that you used to see from your LO. That LO is gone. If she is admitted to inpatient hospice unit, she must have expectation of a short life expectancy. She may still improve and no longer qualify. So you might want to identify a memory care facility for her to go to just in case. Even with Covid, I would not consider having her back to your house. This really could kill you.
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Don't bring her home. Giving a person meds to make her "manageable" is highly questionable practice anyway - so bringing her home would be bad for your mother and terrible for you.

But your choice is not between a) bring her home and zonk her out or b) leave her there and make her wretched. Stop thinking of it in those terms! - it's guilt alone that makes you look at it so.

The goal is to maximise your mother's remaining quality of life and provide her with optimum care. You're far likelier to achieve that with the staff, equipment and expertise available in hospice. Work with the hospice facility to iron out the problems and settle your mother in comfortably.

I strongly recommend that you don't take your mother's calls for a few days. Make a pretty sign for her saying "Ladybug is away 'til Thursday" (or whatever excuse will make most sense to her) and ask someone to pin it up where she can see it. Then stay in touch daily with the hospice team ONLY to answer any questions or give constructive advice. They can't take the same care of your mother as you did when they've only had charge of her for a couple of days, but they will be doing their best.
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Your mom is being cared for. Step back a little and let her adjust. Of course she will guilt you but 13 years is enough.

You are entitled to live your life. Now it’s YOUR time.

My mom was in a NH for the last 14 months of her life. She had to go after she was found to be constipated and had a fecal impaction. No one knew. It was no one’s fault either.

She did not like it at all. Prior to her admission she had wandered outside in the middle of the night, left on an Oil Fryer and the oil started smoking and she almost burned her place down.

You have to steel yourself to the complaints and negativity. What’s worse is as a caring daughter/son, her complaints probably make you be able to make everything alright.

But you cannot.

Go to your car after the visits and cry. I did- many times. Take it day by day but don’t bring her back home. At our age (I am 62) physically it’s impossible to do it all.

Go see her, care conferences, etc. Assure her needs are being met and be her advocate while there. All of the above is being a good daughter, which you have been. But it’s time for you now.

Best of luck to stay strong !
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I am so sorry ladybug that youre having problems.

it’s a reminder to me to remind my daughter why i want to live in a hopefully good facility someday. She wants us to live with her but i say no and hope i dont hurt her feelings. But she doesnt know that she may be getting herself into the same situation you’re in.

i think your mom would feel the same if she were aware of what’s going on.

i hope that makes sense.
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RedVanAnnie Jun 2020
What a nice thought to think Ladybug's mom would feel the same way you do if she were more aware.
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