My 58 yo husband suffered a series of strokes over the winter. He's been in a nursing home since Feb 15th. He wants nothing more than to come home. I don't know what to do.
The NH is telling me that he's not ready and needs constant care. From what HE says, they DON'T care for him.
We're paying out of pocket (his Medicare won't pay for NH, I'm still jumping through the hoops to get him Medicaid) for them to give him pills and wipe his a$$. He's legally blind and is wearing Depends because he can't get to the bathroom.
They say he can't ambulate, he says he can. I know I need to go see him for myself, but they've *just* reopened for visitation. I have to schedule an appointment.
Now the awful part. I don't want to care for him. I am not a nurse, or a caregiver. Even my kids know that if they're sick, take an aspirin and go to bed. I mean, I'll take your temp, take you to the hospital, and make you soup, but I will not listen to you whine about how sick you are. This is alllll he does on the phone. He tells me that the aides are stealing his clothes, his shoes. They purposely feed him fish (he's allergic), there's 4 "kids" who come into his room and "mess with him" by pulling his hair, beard and moving his phone. The nurses are mean (every one I've EVER spoken to (except one) is a sweetheart.)
I will probably have to get a home nurse (how do I do this?) I don't want him laying in bed all day upstairs in our room with a day-nurse sitting there in my room all day. Should I make the dining room into a bedroom for him? Get a hospital bed, commode, tv setup....
He swears that he can do things. I seriously doubt it.
Thanks for letting me vent.
Cat
I am so sorry, I know it is hard. But God will give you the grace to live each day. Just try to stay there and not count how many days you have gone through, or what the days ahead may hold. Just live today. But yes, I agree with the others, really take your time now to make a plan. If you bring him home now, and he isn't ready it would be hard to go back the other way for him. Bless you.
Zeph, your calling as an RN shines through, especially recognising your own strengths & when 'team nursing' is required.
Remember, hubby is in a nursing home because it now takes a village to take care of him [3 shifts of caregivers]. If he came home, it would be a village of one [1 shift of 168 hours per week]. The teen-age children may want to help or may not, it needs to be their choice.
At least you have some options. Hopefully with enough physical therapy hubby can return back home :)
First, there may be a very small handful of people who are pleased or relieved or resigned to enter a nursing home because they are aware that their multiple needs REQUIRE SKILLED CARE ON A 24/7/365 basis, but there are very VERY FEW.
Second, whether we want to care for our LOs at home or don’t want to at all, it is NEVER as easy or even as possible as you think it will be to actually do so when you are actually doing it, and frequently it is MUCH HARDER and becomes progressively MORE DIFFICULT the longer you do it.
Third, your children have hopefully adjusted to the difficult loss of their father’s active life and presence as part of their current lifestyle, and as teens, are still adjusting. The presence of a very sick, unpredictable, demanding parent in what is also THEIR HOME is a constant, unremitting reminder of their loss. Some kids can adjust, some can’t.
You are by no means a “bad wife”. You are a pragmatist, you are frightened by how difficult this already is, you are parenting, you have lived through Covid, you have been catapulted into making very difficult decisions for a bunch of vulnerable people, including YOURSELF.
You CAN arm yourself with helpful advice by using some of the good suggestions you’ve already gotten. The social worker at the nursing home may also be able to give you some quick recommendations for help with your legal and financial questions.
In my most recent caregiving “adventure” the social service department literally got me started with how to get the services my LO needed.
EVERYTHING is 100 times worse because of Covid, but if you start pulling together your answer file, you’ll start to feel more empowered.
We’re all hoping for you to find your way through this. Let us know how it’s going.
Never say never, but it's certainly sensible to tell him "not yet."
At least wait until you've been to see him (and read back through his care history) before you even think about deciding.
I think there is some Dementia here. Not unusual with strokes. You need to ask for a neurological consult.
For you, you need to protect yourself. Medicaid will allow you to split assets. His portion going towards his care and when spent down u apply for Medicaid. You remain in the house and have a car. You will have enough to live on. Talk to a Medicaid caseworker about this. If it gets overwhelming then consult a lawyer very well versed in Medicaid.
I could tell you it is easy..
But it's not. I just try to remember she is a person and that I love her. And do the very best I can. If I were you.. I would take him out. No matter what he complains about.. He does not deserve to be treated badly. EVER. And I would report the issue to the director.
It's perfectly fine to change your dining room into his bed room.. Who cares what you do in your home!!! At the very least, I would move him to a different nursing home. You need to make up your mind what is best for YOU.. If you can't handle it, you can't handle it!! Not all people are cut out to give this type of care. Either way, I wish you the very best. And pray you make a decision that's best for you.
- are you his durable PoA? If not and he is no longer cognitively able to assign you, you may need to pursue guardianship in order to legally manage his affairs (even if you are married to him). If he hasn't created a PoA and he only has mild cognitive/memory issues then he might still be able to create this important document. You can go to Legalzoom.com and find PoA document specific for your state. Print it out and take it to him, go over it with him and if he understands what signing it means for him, then follow the instructions on how to legally complete the document.
- are you his Medical Representative? HIPAA privacy laws will require that he assigns you on this form provided by his doctor/clinic. This allows you to have a discussion about his medical information without him being present. Without this I'm not sure how much info his medical team will divulge to you.
- I'm hoping you've been looking for all his important other paperwork, banking, insurance, investment, passwords, etc. so that you can continue to manage things.
- has his rehab progress stalled? What does his doc/PT team say about any recovery of functions? This would help you know if he CAN come home and still perform some or all of his ADLs (activities for daily living).
Continuing to pay out of pocket for a facility won't be sustainable unless you are significantly wealthy. Once you get a grasp on the fullness of his situation you'll have a better idea of where this may be going financially. At that point you may want to consider a consultation with an estate planning attorney who is familiar with Medicaid qualification to see what your options are. Even if he comes home he may still require in-home aids, which will become part of the monthly budget.
You can only do what you are able to do. Be patient with yourself and the situation as it unfolds and you see the bigger picture. You'll get lots of excellent advice and find resources on this forum. May you gain much wisdom and peace in your heart as you move through this.
My husband was completely bedridden for the last 22 months of his life and I had his hospital bed set up in our living room, and at that point had hospice involved as well, though they're really not much help with the hands on.
Why don't you wait until you can go for several visits so you can see for yourself what exactly is going on, before you make any rash decisions. That will give you a better idea on how to proceed forward.
You have to do what's best for not only your husband, but for you as well. I wish you peace in whatever you decide. God bless you, as I know this is hard.
I will go see what he can do before I even consider making discharge plans.
I work full-time. Our kids (17 & 14) are home, but they're still in "school" virtually. They certainty shouldn't have to be taking care of him.
Thank you for your kind words. I'm sorry for the loss of your husband. God bless you.