Mom has been in the hospital 4 times since January. Once for a mild heart attack, twice for hernia bowel obstruction, and most recently fractured hip from a fall. She's been in rehab for one week so far and wants to go home. She has dementia which has been steadily progressing. She doesn't understand why we can't come in to see her. We window visit twice per day and one video call. My brother and SIL also visit at least once per day. My problem is how do I tell her that she's going to be staying in the NH permanently after rehabbing is done? I feel horrible when she almost cries about coming home. I've been her sole caregiver through all of this since she refused outside help after a few weeks of visiting nurse, PT an OT. Because I'm the health care proxy and POA, my brother says I have to make a decision about her staying permanently. I feel so guilty even thinking about it and so anxious. I am 60 with my own health issues including a broken foot but I persevered through all of it to keep my mom home. I am so torn. She doesn't even realize that she has dementia so broaching the subject is tough. Any thoughts on what to say or not say is much apprectiated.
You are not a bad person for making this decision. You need to take care of yourself first and foremost, or you won't be there for your mom! Her having both physical and cognitive issues, which will both intensify as time rolls on, means you will be tending to her 24/7 every single day and be completely overwhelmed as you will have no real life. Not many can do this, or want to. Please don't feel guilty -- I had to do it with my MIL, so I get it. May you gain peace in your heart as you adjust to this new arrangement.
Basically, you can't reason with someone who has dementia and it gets worse over time.
It sounds like she's where she needs to be at this time of her life and her level of health. She would only get more difficult to care for at home even with your broken foot well.
I hope you did not promise to not place her in a nursing home when you were a little girl? That's not realistic for you don't really know what you are promising. If your mother asked you to promise, then that was not fair.
It may help to talk about your feelings of guilt with the NH social worker either on the phone or virtually if he or she can do that.
I don't think telling her she has dementia would help! She's either going to get upset and strongly deny it or forget that you told her.
You really can't tell someone with dementia what to do. You have to find ways to invite then to do what you want them to do. Like, mom how about I ask the social worker or doctor to talk with you about that? That's guiding without telling and she'll likely forget it anyway.
I wish you the best.
I found that my Mom took her demeanor and attitude from the way I presented, and my tone of voice. I’m so sorry that you’re having to go through this, and that you’re having to reverse roles with your adult parent. It’s so unfair!!!
You made a good decision for her based on HER needs AND YOURS.
It is very common for an elderly relative to plead to “go home”, and that period of adjustment is torment for both the resident and the caregiver, but you have to convince yourself that her safety and care are more important than what she says or how what she says make you feel.
Your brother is wimping out on you, so you can comfortably ignore his input. Guilt is a waste of your valuable energy. You know what needs to be done, and why.
Hope this is the hardest thing you ever have to do, because if you can acknowledge this as such, you can move forward in the peace of knowing that you’ve accomplished something you’d never thought you’d have to do.
By the way, at one week, She actually may be seeing too much of you and your brother right now. See what happens if you alternate days. She needs to begin to learn to trust her staff.
All hopes for a successful adjustment for all of you.
I'd avoid the 'dementia' discussion entirely. My mother has moderate dementia and lives in Memory Care. To hear her tell it, however, there's nothing wrong with her at all. It's all the OTHERS who are stupid morons and belong there, not her. She's always ALWAYS had a strong need to feel 'better than' so I let her keep her delusions of grandeur. Sometimes she will ask me to come pick her up and get her out of there, since she 'doesn't belong' in such a place, but I tell her that she IS exactly where she belongs: In an environment where everyone cares beautifully for her and she has attention 24/7, which she would get nowhere else. If she presses the subject, I tell her the only other alternative is Skilled Nursing (she was there for rehab last year and actually liked it BETTER than she does the ALF she's at now). Little does she know that she's running out of money for private pay and will need to go to Skilled Nursing next year ANYWAY.........I just avoid that topic entirely.
Wishing you the best of luck with a sticky situation.
What is helping me with the decision is this: My mom is on a journey to leave this world. I think she knows it. As she moves into a nursing home, although I will visit every day, there will be a separation. Eventually she will get used to it and she will continue on her journey.
I don’t want her to leave her home. But, as I discern my decision, I realize that keeping her home will serve only to fulfill my need to see her rather than her need to go on her journey. It’s hard, and I spend much time crying, but it is the right thing to do for HER. It’s all about her journey, not my needs.
You are doing the right thing.
Write it down and rehearse it.
Wait for the opening, take a deep breath, release.....and say it with conviction you have made the first step in planning your future.
Make your decision and if anyone objects, ask them if they would like to be her caregiver permanently and with no help, then when they say no, simply say I rest my case and go on doing what you need to do with your life. Each time you visit mom, she will repeat that she wants to go home. Repeat that again because she refused help this is what happened and nothing can be done. Do NOT take her home...even for a visit or the cycle starts again. Enjoy your free time to live your life. You can still go visit mom. This is on her.
Just know in your heart, you are doing the very best for her.
Believe me, they always want to go home, even if at home.
Do you have NH placement arranged yet? When she is discharged from Rehab, help her move to her "new room."
You and your brother and your SIL are doing an amazing job of visiting. Continuing to be your mother's 24/7 caretaker is too much. Accept that you cannot manage that level of care and continue to make the best placement arrangements you can..
1) The mother to whom you made that promise is not the same person you are now concerned about, she was worried but still competent to make a decision then, she is no longer competent to know her needs.
2) You are not the same person who made the promise, you have been changed through maturation and through a greater understanding of her current needs.
3) The facility she now needs probably bears little resemblance to the one she feared decades ago. The thing she feared was probably a poorly staffed storage facility for unwanted elders waiting to die and ignored by their families. That was a stereotype many years ago that was not completely true in its time and is not completely true now. Depending on finances, you are taking care to place her in the best place for her, you will not forget her, and you will continue to care for her, whether she understands that or not.
My own mother made that plea back in the '60's based on misinformation but she has admitted in later years that her request was not right or fair. Although she still wants to remain in her own home and does not realize that she really is not able to care for herself adequately, she does acknowledge that the time may come when she will need more care. My sisters and I have told her that she will need to have residential care if she can no longer clean herself or dress herself, if she can no longer get herself from her bed to her chair, or if she can no longer get herself from her chair into our cars. She agrees--for now. My sisters and I are all in or near our 70's and cannot assist her in those things. If the time comes when those conditions come about and we will need to pressure her to accept residential care, that old promise will hold no weight.
It is sufficiently difficult to watch your mother's condition deteriorate until she bears little resemblance to the powerhouse of your youth. It is unkind to yourself to shoulder guilt about an old promise that neither of you really understood. Taking care of yourself is the best gift you can give to your own children.
I remember my dad asking my if he had to stay in AL. I shook my head yes and it killed him. It still haunts me.
I'm sorry you have to make the decision on your own, that must be very hard. But you obviously want to do what you feel is best for your Mom and your decision is made out of love for her. Don't allow guilt to take over, it's not warranted or healthy for you.
I struggled with what to but decided on assistant living facility. I dicussed it with her and her case worker discussed it with her. She has currently been there a month and is still getting better, but she want to come home and always asked when she can come home. she does not understand about the virus she is not sure where she lives and thinks she is 11 years younger then what she is. She dementia and I stuggle everyday should U bring her home. I feel so guilty about this and second guess myself every time I see her.
I feel I made the correct decision she like the place she is at, and has lots of things and friend to keep her busy. if she came she would site by herself most of the day or just lay in the bed. I believe she is much better off where she is and is getting better can then she would with us, but she does not understand that.