My dad has Progressive Supranuclear Palsy/PSP (diagnosed about 2 years ago, but symptoms started about 4 years ago) and we have had 24-hour live-in home care plus overnight care for him (he gets up a lot to pee or gets disoriented).
We've had both for about a year now as care had become too taxing on my mother alone and my dad has declined significantly over the last two years. He can barely talk and when he does it's a whisper and doesn't often make sense. He coughs a lot when he eats or drinks (we cut up easy-to-eat foods and put thickener in his water). He lost a lot of weight, isn't interested in doing anything (apathy), but he is often restless and tries to get up on his own to walk around. But his balance is so bad (and he forgets that he falls) that if a caregiver is not with him he will fall (usually sideways or backward).
He can't see well due to eye movement control issues so movies and TV don't really interest him and audio books are too hard for my parents (not technological at all). He won't usually use a mobility device (forgets and can be a hindrance), he is easily fatigued when walking, and often disoriented. Having 24-hr care is not always helpful with callouts and replacement people who aren't always clued-in to my dad's behaviors well and can cause him to become agitated and hit or glare or say mean things.
My mom is beyond exhausted, even with the help, and I am pretty sure she is suffering from PTSD herself with her levels of anxiety and depression (she just started an SSRI). Even with 24-hr care, my mom can't leave the house because it's a two-person job most of the time, and when she can leave she is just too tired. She is also a stranger in her own home often.
There is a bed available at a good memory care facility and they said they can support my dad, but are transparent that nursing home care is not the same as 24/7 1:1 home care and patients will fall at nursing homes. My dad will 100% be sad having to go, but if he were in the right state of mind, I know he would be yelling at us about how much stress his home care costs and to not even think about the decision to use the nursing home. But it's really hard making the decision; I feel like it's between keeping my dad alive and keeping my mom alive at this point though...
This decision is so tough. To know that he will get less 1:1 care at the NH, but my mom will be a person again... She has absolutely lost her mind with all of this. I feel like placing him is probably the best decision for my mom's health, but I'm worried he'll be worse off or he will become an issue with his high needs and they will ask him to leave. Anyone else have a similar decision to make on behalf of their parents?
Original Post:
MC is not the same as 24/7 1:1 care. However, at the right facility, it is awfully close.
My Mom was a fall risk, yet at the MC she took very few tumbles as it was a short straight walk from bed to toilet. They told her to call them before she started to get up, however, she rarely remembered....because when you got to go, you got to go. There were more than a couple of times they found her sleeping on the toilet, with her walker by her bedside....so yes, she walked there on her own, something she couldn't do during the day.
While she was at MC, we continued doing PT exercises that helped her fall less and that was really the highlight of her day. I even gave her some obstacles to go over and down, so that she would get experiencing stepping up and down with her walker and the way your body has to place your weight to stay upright.
However, your situation doesn't sound as able-bodied as my mother was.
I would do the whole MC again, not any earlier.
...and in case your Mom is worried about being alone, we had several couples who lived in the MC rooms, one needed MC and the other didn't. It provided them comfort for each other, but also ensured that they could keep an eye on each other while still getting the help they needed from the other caregivers. When one passed, the other generally moved upstairs to Assisted Living and I lost track. There was another couple where the husband resided in MC and the wife resided in AL, and she visited him every morning. This provided her more freedom to come and go as she pleased, but comfortable in knowing that her husband was safe if she was not there.
Good luck in your decision.
best of luck to you.
People have their own lives. Jobs and kids at home. Maybe they are in poor health themselves. Maybe their parent was abusive and it’s best to stay away.
The level of care the OP’s husband needs is not something people can just ‘chip in’.
You would get a bit more help with a Nurse that will come 1 time a week. More often if needed,
A CNA that will give dad a bath or shower 2 times a week.
The Nurse will order ALL the medications that are needed as well as all the equipment that is needed to safely care for him.
The CNA will order all the personal supplies that are needed and everything will be delivered to dad's home.
You can also request a Volunteer that can come and visit with dad. They can do no "Hands on" care and the visit would be limited to about 3 to 4 hours. A visit can be arranged weekly.
And for a nice break Respite can be arranged. this is covered by Medicare, Medicaid and most insurance.
I can tell you no matter where dad is he WILL fall. Does not matter if he is in AL, MC or Skilled Nursing. A person will/can fall when there is a caregiver standing right next to them so no guarantee anywhere.
If mom is overwhelmed and can't leave even with a caregiver because dad needs 2 people maybe there should be another caregiver there at all times. (I know $$$)
A few thoughts.
Is dad a Veteran? If so the VA has programs that might help. Please check with your local Veterans Assistance Commission or your State's Department of Veterans Affairs.
Also check with the local Senior Service Center in your area and see if there are any programs that might help out.
I am honestly more worried about your mom.
oops...just saw your update and you said he is on Hospice.
Please ask for a Respite stay for him so mom can truly get a break. She then needs to get away from the house even if it is a weekend at a local hotel. She needs to be away from the hospital bed, the diapers, creams, ointments, gloves and all the rest that goes with taking care of someone at home.
Thank you so much for all your support. My mom and I talked it over and we are going to continue in home care for now. She was not ready to place my dad and respecting her wishes I agreed but did add some compromises to this decision. 1. She needs to add group therapy support for her mental health (1x - 2x a month), and second add seeing her friends for their weekly walk again. I also talked to the home care provider so that we can both tag team my mom to get her to start doing things that help her get some of herself time back. She is so worried about making the care givers job easier that she never gets a break from constantly spinning her minds wheels, doing chores, or helping them take care of my dad. The care giver is amazing and she is totally on board with this plan. Mom has a lot of control issues in general so now when all the control is out the window she has difficulty navigating everything in a flexible way but the care giver and myself and my sister will try these two things to help get her the support and time to herself she needs if she is deciding to keep my dad at home. With 24hr 1:1 care at home and no falls it’s so hard to send him somewhere knowing he will absolutely fall every time he stands up no matter how good the NH or MC is. If he were less active it might be more of a logical consideration but he’s up and down all day restless on wobbly weak legs. He is also on hospice and we have those nurses support a couple time a week as well, as his situation is constantly changing. Right now for example dealing with toilet issues that just started up a week ago. Sigh. It’s never easy seeing this happen to someone you love. I appreciate you all and am sending my support and hugs to you if you are navigating something like this currently and to those who have endured it in the past. It’s so so hard!
-I.
It sounds like it's a bit of a relief, just having made a plan. Of course your plans will have to change to keep up with your father's decline.
I wish you and your parents well through all this.
Now, hospice is end of life care but they aren't out to kill him, he could be in hospice care for months. Mom getting EXPERIENCED SUPPORT could make all the difference in their situation. I'm not saying that you can't support your parents but they are career professionals who been at this stage in peoples lives.
See what mom thinks, ask her what she wants to do. I know it must be hard to watch him wither away but does she want him somewhere else while this happens? Lots of love!
Some smaller care homes might have a better ratio of aides to patients. I know there are some nice ones.
I don’t have experience with this problem.
I sure wish mom could get a break regardless of what you decide. Does she have a relative she could visit for a while. With a little rest she might be better able to contribute to the decision and you could see how they do separated. I wish I had a better idea. Let us know what you decide. We care.