Hello.Mom is in a nursing home with dementia but she seems fairly functional. We are awaiting medicaid acceptance and she is extremely unhappy about being locked in prison with no privacy. The facility is not bad and the staff is nice.
I feel horrible for her and would feel the same way. She has a house which I am cleaning out and of course she wants to return home. In my opinion, the dementia is not bad enough where she couldn't live alone with a live in knowledgeable caretaker.
I know things will get worse but her quality of life matters. Im currently making the house safe so she can visit her cats while living out of town.
Would home care be a temporary alternative to being trapped in a NH?
Sorry for all the questions
I will look into getting the cats rehomed and give up on the house. There is so much junk and roaches in it now anyways.
I thought at least letting her get a break from the NH would be good for her but maintaining that house to do it would be monumental. Thank you all for talking common sense. I did not see things clearly.
Lastly, would it be a waste of time to try to see if she can get a private room on Medicaid? I think that would be a HUGE help.
My FIL would tell us he needed to go home for one reason or another - but couldn't get out of the bed without a two person assist or a Hoyer lift. We asked him how he planned to get into a car or into the house. He said "You'll see, when I get there, it will happen. I can take care of myself, I don't need any of you" (5 minutes after which he thought I was my 23 year old daughter... I took it as a compliment but still I am 100% certain that while I look younger than my age according to people, I cannot pass for 23)
Getting a break from the NH can be as simple as taking her out in a wheelchair on the grounds. Anything else at this point may be too much for her. If there is a courtyard maybe bring her a milkshake (if she likes them) and have a little picnic outside.
Private room - I'm not sure Medicaid would fund that - and it might only be temporary - but I guess it never hurts to ask.
My opinion only. Speak with her MD and you will get a better idea. I've no idea if you think that she can live ALONE at home; that would honestly be awful decision making. There is clearly a reason she is in care now. I think that you need to accept, understand that this is permanent and grieve it with her. And of course, ultimately the decision is yours; you know your mother and her condition much better than we do.
Have them bring treats and enrichment activities geared towards your moms likes and help her adjust to her new home. Send the new friend one of those life like cats to bring as a surprise that mom can keep.
That could help her settle in.
Does your mom have any of her personal treasures with her? Like pictures, bedspread, anything she finds joy in?
I would encourage you to ask the doctor if they can prescribe a mild anti-anxiety med for a few months, to get her over the hump.
I think that you are learning what we all did in the beginning and that is "we don't know how to do this, now what?"
Thankfully you found this forum to help guide you through this tough situation.
If she can truly live at home WITH a caregiver and the house is such that it will be safe for her as she declines then that is a viable option. It will take work on your part managing the caregiver. And you do have to have a backup plan if the caregiver is sick, on vacation.
If you are a "numbers person" do a breakdown of the cost of the facility VS the cost of maintaining the home and paying for a caregiver (I think you will find that the cost of the facility is less)
When mom talks about going "home" do not entertain the idea. Redirect her. Tell her it is up to the doctor when she can return home. Or you tell her that there are repairs that need to be made.
The best way to describe things is I dont think her dementia is advanced enough to allow her to adjust yet. I can not use diversion or ignore her constant desire to return home. She believes she can manage things at home but that is far from reality. I just can not man up and tell her it cant happen.
You all are right. Home would be a disaster.
She is extremely sweet and had a hard life. It is agonizing to see her not enjoying her final years. I need to stop whining and find a compromise perhaps?
Thanks for your amazing patience
And while yes you need to "stop whining" and instead be grateful that your mom is now safe and looked after 24/7, you certainly don't need to be looking for a "compromise" unless that includes excepting your moms situation for what it is and coming to peace with that.
The dementia is not currently bad enough to where she couldn't live alone...with a live in knowledgeable caregiver...You understand that "live in" caregiver still has to have time off, they still have to sleep, have outside appointments, have vacation time, and have to leave the house. Absolutely bare minimum cost @$25 an hour for 40 hours would be $52,000 a year. When we calculated 24/7 care for my FIL, using an agency to ensure coverage - it would have cost him almost $220,000 for a single year.
As others have mentioned, if she is waiting on Medicaid approval, chances are very high that SHE can't pay for an in home caregiver. Does that mean that you would be funding it?
Dementia severity can change on a dime. My FIL went from "not bad enough" to no longer present in this reality is a span of a few months. Had he been home, it would have been awful because he was falling constantly (forgetting he couldn't walk, trying to "go to work" (at a store he hadn't even visited since childhood), hallucinations and delusions, no concept of time, massive agitation and finally having to have his bed lowered and mats put on the floor and doses of medication to keep him calm.
Devil's advocate - what happens if that occurs and the caregiver bails? What if the caregiver gets sick?
Transitioning to facility care if never easy - for anyone. But if she is already there - I think you know that a "temporary" alternative taking her home is a Band-Aid and not a solution. And our doctors advised that every single time you move someone with dementia you are causing them more distress and agitation.
And finances play into this big time too. How long can she afford 24/7 in home caregivers?
Start thinking with your head instead of your heart and make decisions that keep your mother safe 24/7, that's my advice.
This is now about what is best for your moms safety and her care and not about what she wants or doesn't want.
Be grateful that the facility she is now in "is not that bad and the staff is nice." That is a blessing in itself.
Your mom will only continue to get worse, but you have to stay positive and not feed into her wanting to go home whether you feel bad about that or not.
This is now your moms new home, so please try and make the best of it for all involved.
Ask to have Mom evaluated for 24/7 care. If found she needs it, then leave her where she is. But Medicaid won't except her for LTC if she is not 24/7 care.
You have to pay them, even a live in, you have to give them time off, which would require having another caregiver come in and you would need a contract that covers the what, when and how much for the benefit of all involved.
Remember, you get what you pay for. Giving someone a free room to provide 24/7 care and them being agreeable is a red flag. You are getting someone that is desperate and I wouldn't trust someone that says they are willing to forsake their entire lives for a free room, because the reality is that is not sustainable or a sound mind move. That is a waving red flag.
Best of luck deciding how to proceed and may you find the perfect fit if you choose to remove mom from her current care situation.