My husband has had terrible back trouble for 8 years, the worst being since 2016. He has had surgery that didn't work and is pretty much in pain 24/7. He fell on May 24 and sustained a compression fracture in his lower spine. He was just feeling a bit better from that when he fell again on Aug 4 and broker his left femur. After surgery and a short hospital stay, he was transferred to a rehab facility for physical and occupational therapy. Of course I can't be with him at all, but do window visits twice a day.
He HATES it there! He keeps asking me to take him home. I was barely able to care for him before the broken hip, but I know for sure I would not be able to care for him now since he can't get in and out of bed, or to and from the bathroom without major assistance. He's a big guy, my back isn't in the best shape, and I'm 69 years old. I KNOW I can't do it.
He called me late tonight and INSISTED that I come to get him! He needs more time in the rehab facility, but he's so depressed, and so angry...I just can't make him understand why he can't come home.
I really don't know what to do. My heart is aching for him, I'm scared to death. I don't want him to give up and die. I'm terrified for us both.
Any advice would be so very much appreciated.
Being quarantined and isolated from other people seems to exacerbate whatever issues we have normally whether it’s pain, confusion, stubbornness, etc.
The advice you’ve received so far has been excellent. He is where he needs to be until he is strong enough to be at home. Try to remember how bad it was when he was home and you were so worried about his falling.
Remember how likely it is that he would fall again if he went home too soon, perhaps damaging you as Well.
I'm sure you have already thought of these things but sometimes reminders from several other people helps me.
Virtual (I am beginning to hate that word) hugs to you!
Then the next day he calls to say he can't stand it another minute and he needs to get out of that place right now.
This dang COVID thing complicates everything. He hasn't been able to even leave his room since he got there because new patients are quarantined for a bit. He hurts. He's bored. He's lonely. My heart aches for him. And I can do NOTHING to help.
When I visited yesterday morning, he looked and sounded so good and we talked about life in general. He asked about family and friends and our dogs. He misses our dogs so much. One in particular who is always on his lap. He was clear and I even got him to laugh a time or two. We talked about physical therapy again and how important it was that he participate. It was good.
Then last night he called me late. He has been sleeping and when we woke, he was having a hard time figuring out where he was, where I was, just what was going on. He was really freaked out. Oddly enough we had one of the longest, most coherent conversations to date. I'll bet we talkedfor over 30 minutes. It was so nice, and was a comfort for both of us. And THEN he tells me that he doesn't know how he managed to get from the bed to the wheelchair on his own, but he did it. WHAT??? My heart is in my throat as I beg him to PLEASE not do that on his own! "Isn't that why I'm doing physical therapy?" he says. Angry because I'm asking him to ask for help, then calming down as I suggest he look for the call button to get an aide to help him back into bed.
The ups and downs are exhausting. My own mood of being worried about him, being angry when he does something like trying to transfer on his own, feeling resentful when HE gets angry and says I'm "lecturing" when I try to explain why he shouldn't, being so, so sad about the entire situation. And the guilt about any of my feelings when I know that he must be feeling all of that and more. I feel so weary. And scared every day.
I try to keep busy...goodness knows there are many things to do around the house and yard. Yet I have little motivation to do anything but worry.
I'm sure y'all know the feelings. It really helps to know that others know how I feel. Thanks for listening.
It’s not want he wants, it’s what he needs.
Lack of oxygen certainly can cause confusion.
A good psych eval will be able to distinguish between the temporary confusion lack of oxygen can cause and the sort of lack of insight that might be caused by true cognitive decline.
Is the stubbornness refusing to use his cane/walker new?
For some reason he has refused ALL physical therapy from the start, even though ever single doctor (even before the surgery) has told him that it would be THE best thing. I don't get it. It's fine if someone cuts on him, or sticks needles in his back, but he just WILL NOT do the one thing that takes HIS OWN DETERMINATION AND EFFORT, and would likely help SOOOO much! It's so frustrating!!
He was using the cane for a while after his back surgery and the cane or walker after the first fall in May that resulted in a compression fracture...for a time. But for whatever reason, he figured he was able to walk around without them no matter how much I urged him to.
For now, I would say he is an unsafe discharge. Maybe you can get the therapist to talk to him about how it would be hard for you to care for him. He needs to get stronger so he can do for himself.
Why does he fall all the time? Stubborn?
When you’re with him through the window, focus on ANY tiny bit of progress he’s made. Do the caregivers and therapy staff realize how depressed he is? Sometimes a smile and a wink from a PT or OT can make a big difference, but make sure that they know that he needs a little extra TLC.
Are they on top of his blood sugar? You and he know that shifts in sugar levels can cause mood shifts as well.
Have you asked him to tell you how he plans to be taken care of at home? Will he let you involve him in a plan for home care? Are the OTs doing ADL activities that he can relate to his future ability to help caregiver(s) ?
Are you able to tell him firmly and lovingly that you are UNABLE to assume full responsibility for his return home before he is able to help himself as much as possible?
Finally, if he called you “late tonight” is it possible that he is not able to realistically grasp the severity of his situation? He needs to know that you are doing all you can for him, but that YOU need to be able to keep yourself well in order to prepare for his potential return home.
And you DO need to keep your welfare in mind. Are you eating well, taking mini breaks, little walks, phone calls to those close to your situation. Whatever small things that can lift your spirits and refresh you, however briefly.
I know you want to be at home. I want that too.
But you need to get stronger first. I am thinking of you every day & will phone you. Try to keep positive.
((Hugs)) to you Jdawn. He is where he needs to be.
My friend's Mother just gave in to that very 'take me home' demand last week. He could not move from the bed for 24 hrs, tried, fell. EMS called & back to hospital with fluid on lungs from lying flat, dehydration & now a head wound. Now she feels bad she said yes.
It takes courage to be firm but by saying NO to home (at the moment) you are saying YES to more care plus his & your safety.
i feel for you so much right now (((Hugs)))
I know how painful this has to be for the both of you❤️
I can only share my experience. I care for both my 84 year old husband and my 29 year old developmentally disabled daughter.
I love both of them Sooo much I don’t want them to be in a facility.
My husband has had to be in rehab many times and many times I stayed by his side day and night through hospitalizations and rehabilitation stays.
I am exhausted as I have been doing this for 5 years+.
Please understand as I am coming to this understanding personally...no matter how much we love them we can’t take away the pain, cannot make them better and when it comes down to it the care we provide, especially if we are doing it alone will shorten our life.
If my love alone was enough to sustain my ability to provide care then everything would be fine.
Please do not bring him home yet. It will be detrimental for you both.
Right now he is in a place where they have the right equipment, right professionals to care for him, staff and nutritionists to assist him. At home it will just be you.
You alone without a team are not enough.
I woke up this morning exhausted after being up with him twice last night and all the night before. My time is not my own and all my time, energy, attention etc is used up everyday...caregiving.
It has taken a huge toll on both my physical and mental health.
My big wake up call was tonight when I fell asleep boiling eggs only to be awoken by him calling for me to go to the bathroom (and smoke in the house and a scorched pan still on high-he didn’t even notice the smoke). Thank God for protecting us!
See about getting him a counselor or rehab psychologist to help him during this difficult time. Please know that insisting he stays in rehab may be saving both your lives.
God Bless you and keep you during this difficult time ❤️
Thank you so much for sharing your story and for so beautifully expressing the truth of caregiving and its toll on those who do it. I am deeply touched.
Is his depression being treated? And what's up with not wearing the oxygen?
You are his advocate right now. Tell him he has to help YOU to help him!
We moved to a one-level home in January because of his mobility issues. I haven't thought of a Hoyer lift. Didn't think I'd need that at this point, but maybe I will. My husband's brother recently died, and his wife still has the Hoyer lift. So that's possible.
I was going to call the hospital case manager tomorrow to see if she had any ideas, and see if home health has assistance on this level. We had home health after his last fall, and husband was not cooperative. He wouldn't do the PT which is how he ended up in this predicament. And we talked about that! About if he hurt himself again, he would end up in rehab and I wouldn't be able to visit him.
I feel like a traitor. I feel so incompetent. I'm just so, so scared.
Thank you for the hugs!
That policy has got to work for something right?
Short term, I would blame the doctor. Say that he can't come home until the doctor says that it's safe for both of you.
Is there any degree of cognitive impairment or depression going on here? It seems like it would be obvious to him that if he is not yet mobile that it is simply not practical for him to come home.
Perhaps the best thing would be to consult with the OT and PT staff at the rehab (via Zoom if no in person is allowed yet) about what needs to get set up for him to be able to come home. Is your place all on one level? Have you looked into a hoyer lift? There are things that can make this possible for both of you, but you need some time to get ready.