How can I tell my mom who has progressed dementia after a hip fracture that she won't be going back "home" to her independent living apartment?
She broke her hip in early April and it is now healed, but her mild dementia really progressed after surgery. And although the hip is healed but she got 2 additional compression fractures in her back from 2 falls since the surgery (ugh don't ask I am so mad at the hospital and skilled nursing place). She is not back to walking on her own.
Today her medicare OT and PT ended because she is no longer making progress. The OT just talked to her..like ok...you've made great progress..now you are done with OT..good job! My mom then got the idea that she was "finished" and could go back to her independent living apartment. She can barely walk with a walker has to have a caregiver right by her. She is not independently going to the bathroom or doing much of anything independently. Sometimes we need to spoon feed her She cannot take care of her meds either. She can barely put together 6 meaningful words.
But holy cow, when she thought she was done and could now go home to her independent living apartment she gave a long speech as well as she could about she is now making a choice to go home...thank you all for all you've done but I want more space and back to my home and all my clothes etc...and all you people to go away so I can do what what I want to do all day without people telling me what to do....you get the picture. She started ordering the staff and her caregiver out of the room and went from telling the staff off in a very rude way to crying saying how much they had done for her but now she wants to go home.
We absolutely cannot afford to have a 24/7 caregiver for her in the independent living part of this very expensive retirement community so that is out. Her dementia is too progressed and she does not have enough mobility to be in assisted living so that is out. She just wants to go "home" and have things the way they were before her hip break but that is never going to happen.
I don't know how to handle this with her...namely...we are going to be giving notice on her independent living apt and setting her up permanently in the skilled nursing or moving her to a nursing home. When we wouldn't take her to her independent living apt she cried for the rest of the day. It was AWFUL!!!
And I don't know what to do about that sudden very rude talking to her caregiver. I know it is the dementia but I hate this. We have had a 24/7 caregiver since the skilled nursing place let her fall while she healed. Now the caregiver will be phased out soon. It's very upsetting this behavior. Do I need to apologize to the staff for my mom's behavior?
I don't know how to get it through to her that her apartment is going away soon and a skilled nursing setting is where she will be. She cries all the time on and off because on some level I think she understands this. The pain seems to be under control but her dementia is taking over. Sometimes I think she does better when I'm not there. I just don't know how to handle all of this. I know she wants to go "home" but she can no longer be there on her own. I keep telling her that her room in the skilled nursing is her new home but she thinks she is in a hospital and will be going "home" and SHOULD be going home RIGHT NOW! She bounces between crying and being really really mad!!! Sigh. This is just heartbreaking with more heartbreaks on the way.
I have the same problem with my MIL who can't remember why she needs to go to an assisted living facility. She still thinks she can drive, walk downtown by herself, take care of a 2 bedroom condo. When left to her own devices, she forgot to eat, drink, and ended up in the ER with acute kidney failure. She had been living on Snickers ice cream bars and that's it! When we remind her of ALL the reasons why she needs help, she gets really quiet for a while. But, in a matter of a couple hours or less, she's back to saying that she can't understand why she has to move away from her home and why she can't drive. Even looking at all the dents and scrapes on her car and the holes in the garage walls aren't enough to convince her that she isn't fit to drive.
We, as loved ones, I am learning, have to hold their hands and help them through this journey. It's very difficult, but necessary. I wish you luck with this very tough situation.
"Dementia" also covers a huge range of cognitive levels. For example, for some patients it might be a kindness NOT to tell them they'll never go home. If their memory is such that you can get away with it, saying "let's make this temporary room as nice as we can make it for you, so you'll enjoy it until those bones in your back heal and you can go home" might be a comfort. This might work for people who no longer have a concept of the passing of time and don't know whether they've been in the care center a week or a year. Patients who have better memories and retain more of their sense of time would probably not respond well to this kind of approach.
Personally, I think it is OK to feel bad when bad things happen. Not being able to go to her old apartment was a bad thing, and she is entitled to feel bad. I'd cry, too, in that situation -- wouldn't you? Normal aging can be a huge indignity, and aging with dementia has to be the pits. Alternating between crying and being angry may not be such crazy behavior. As with people who don't have dementia, feeling bad so long and so hard that it interferes with getting on with daily living is unhealthy. But crying the day you are told you can't go back to your apartment? That doesn't seem excessive to me. So I guess I'm saying it may be too early to tell whether something needs to be done.
I know that you want her to move past this grief and anger. But I wonder if it would be good to at least acknowledge with her how sad her situation is. It really is very, very sad that she isn't independently mobile. I think I'd be sad with her, at least for a while -- not weeks and weeks on end -- but at least to being with.
As for the things she is saying to staff, I'm sure they are more used to it that you are, and more aware of what is going on. I don't think that you owe them an apology, but it never hurts to express your appreciation for their patience and kindness.
And speaking of acknowledging suffering, let me extend warm hugs to you. What you are doing is indeed heartbreaking. Allow yourself to mourn each loss as it comes.
She is lashing out as her life as she knew it is changing and the dementia is affecting her thoughts, etc. She is feeling out of control of her life. Just allow her these feelings and give her some time to adjust. Meanwhile, make her room home-like with many of her things. My mother has a chair from home with an ottoman in her room and all her favorite prints are on the walls as well as favorite bedspread on bed. Making the room as homey as possible helps.
This is where you start to develop a thick skin, ( I am still working on it). Bad feelings and feelings of anger will be targeted toward you. Just know this is to be expected and it is the dementia talking as well as your mother trying to figure this all out. As you become familiar with the facility, you will find and learnof the many activities offered, etc. My mother is in a NH that is quite active. I've got to know the staff quite well and this does help,
My heart goes out to you - do you live close by? This will help for you to visit as often as you feel necessary. My mother lives 2 hours away, so not so convenient. Even bring her favorite foods - they like that or even coffee she likes. Those are the things I try to do with my mother. Blessings to you and your mother.