Hello, my dad has recently had a stroke in August. He refused therapy and did not learn to walk, or communicate. He can only say a few words such as "yes" and "no", some cuss words, and greetings. He needs 24/7 care and is bed bound due to not being able to walk. He is clearly not fully there either. He is now home but it is extremely difficult to take care of him and is taking over our lives. He is also very sad and has no motivation. The doctors said it was possible for him to walk again but because of his refusal of therapy he has yet to regain that ability. The rehabilitation was very poor with communication and didn't tell us until about 4 days before that he was refusing therapy, so there was no way of us knowing that he was not receiving help and we could not intervene. He does not want to go back into a facility and has made that clear but it is so difficult to take care of him. What is the best course of action now?
I don't blame him for feeling sad and unmotivated. A stroke of this caliber that's left him unable to walk or talk is life altering and awful, my heart goes out to your whole family. Dementia often goes along with a stroke like this too, so you may be noticing a cognitive decline in him. Hopefully dad is ABLE to do the physical therapy required of him to regain his mobility.
Sending you a hug and a prayer for strength and good luck.
I am also uncertain why the MD is so very convinced that your father CAN get better. It is difficult, without speaking, to even assess his mentation.
I am afraid at last you are down to discussing this with the MD and asking how to proceed. If it is clear that your father is bedbound, then you will have to consider whether the family is physically and mentally capable of assuming care for him. If he is eating well, this could go on for some time, but being bedbound can cause pneumonia, and decubitus bedsores, so it is crucial there be an in home assessment, and some equipment that can get him at least into a chair for the sake of his lungs and his skin.
Your Dad may progress to the stage where the best care is multiple shifts of multiple workers, and the visits of family. I am so very sorry. The fact that there is no improvement over two months time is not a good sign. Most recovery from stroke happens in the first two weeks. The rest of recovery, and especially speech therapy, requires rigorous work over a long time for little improvement at times. I am just so sorry.
Speak with his own personal MD managing his care; this is your best guide. If they feel he can improve then the question is HOW, because you are not trained to accomplish this.
While it may not be adequate, perhaps her father would aept at-home therapy. That might be a start.
Some points that our family learnt along the way that helped us;
1. Stroke is a brain injury.
2. Words can have power.
After a stroke, the descriptive term 'Stroke Survivor' was more positive. (Avoid the term 'stroke victim').
3. Recovery is a journey.
It is not a journey BACK to how the person was before.. it is a journey FORWARD. From the intial stroke damage.. great improvement quickly for some, smaller/minimal, slower improvements for others. (Initial intense rehab is important, but with effort, gains can be made for 2 years or even more).
4. Recovery is to the NEW NORMAL. This may include loss of walking, hemiplegia, mood/emotion changes. Depression & apathy are common.
5. Stroke is a life-changing event.
Accepting the New Normal & losses takes time. (Specific stroke helplines & councelling may help adjustment).
My best wishes for your family's journey. A trip no-one wanted or chose, but must endure & find their way all the same.
My late husband had a massive stroke at the age of 48 which left him unable to walk, talk, use his right arm, and not able to read or write.
With much PT, OT, and speech therapy, he learned how to walk again slowly with a brace on his leg, dress himself with only one arm, say a few short sentences and words, but never could read or write again. But I made sure that I was at his therapy sessions every day to make sure that he was staying motivated to improve enough to be able to come home.
And it was my experience that those folks in therapy that didn't have family members there with them were pretty much ignored and didn't receive the therapy that they should have, and I'm only guessing that perhaps that is what happened with your dad.
He needs to participate in all of his therapies, and even though he's now home, one of you can still bring him to his outpatient PT, OT, and speech therapy, and make sure that he's doing what he's supposed to be doing, as he still has time to improve.
My late husband went to his outpatient therapies for many months after his stroke, and well after he got out of rehab.
And like already mentioned, you may have to tell him that if he doesn't do everything in his power to improve that you will have no choice but to place him in a nursing facility. Hopefully that will be enough to start a fire under his butt to do whatever it takes to improve.
What he wants is irrelevant. Make it fast, stop wasting your time mollycoddling him. He didn’t do the PT, so it’s entirely his fault he’ll spend the rest of his life in a bed.
The sad thing about THAT is that the medical system today doesn't much CARE. If you can't afford fabulous, expensive, individualized care, at a certain age you are just sort of thrown on the trash-heap. No one has the time or the money for you.
Regarding your living arrangement, you will need to get help in your home because no one can do 24/7 care alone. Otherwise he needs to go into a nursing home.
I have seen this with both my parents --they didn't have strokes-- but they gave up on physical therapy. They reached a point in their 90s where they didn't want to try anymore. Maybe he just doesn't have it in him to do this.
The bottom line is he needs to want to himself. Maybe telling him that he will need to go to a nursing home would incentivize him to try.
But once he starts and really works at it, it can get better and feels so good as well. He'll notice the difference and feel proud of how far he has come. Maybe he needs some incentive that it will be a fun experience for him.
The one downside is when the session is over and back to the room.
Try to encourage him to give it another try.
So sorry he is going through this.
Which is getting out of their self to feel as another feels.
This awareness is learned through conscious desire and effort.
It is one of the most valuable lessons in my life I've ever learned.
To reach out of myself and my own experience - to experience how another feels - to the best of my ability - and proceed from there.
Even though we don't know EXACTLY how another feels, we can offer compassionate presence to be with them - wherever they are inside themselves. I did this for three years with a client who had severe / advanced dementia. She knew I cared. She could feel it and see it. She never forget me week-after-week. I will never forget her, either.
A person needs to feel / be valued, respected, shown compassion.
This is one important way to do that.
Gena / Touch Matters
It would be better for the family member making decisions to just do that ... and perhaps tell him it is for a short evaluation period.
When a person is depressed, confused, terrified - and more ... the last words they need to hear are threats. Being sensitive, compassionate matters.
Based on what this writer says, the father would likely respond with an 'oh well,' ... 'who cares' ... he has NO will to live.
On top of that, you want to add more fear and uncertainly to how he already feels. No. What might help is holding his hand, smiling, looking into his eyes - making some human contact / connection. Gena
he will know how vulnerable his mental health is to handle any enforced help
on a superficial level as I don’t know your father - I would say I’d give him a choice have therapy or they’re going to take him into facility to look after him
that might not be appropriate tho- only you know your father and if that could potentially cause needless stress
either way I’d speak to your fathers doctor and see what they say
it sounds like you’ve maybe reached all you can cope with looking after him
good luck
I'll tell you what can happen; for us, it's been almost 10 years my husband's been home (kicked out of nursing home for behavior) with me as his only caretaker. He is difficult to care for, and is ironically strong and healthy, since the stroke completely changed his lifestyle. No more work stress, no more smoking, no bad diet, he can only drink thickened protein drinks all day long. And has me taking care of all the stressful work!
Of course your father says he does not want to go back into a facility. He'd rather be comfortably pampered in his own home.
Tell him he has no choice. The family is not equipped to care for him at home, and he can either return to a rehab facility and cooperate with treatment, with the goal of returning home. Although, it is unlikely he will make much progress after waiting too long.
Or, option number 2, he can be admitted into a long term care home.
Depending on the family's budget, and preferences, and his care needs, there are assisted living options, or a nursing home, where he would live out the rest of his days. Maybe that will prompt him to give therapy a try. But, if he suffered brain damage, he is probably not thinking with his usual clarity and is unable to assess the situation properly.
If you think it's already difficult now taking care of him at home, consider how long he could live in this condition. And it won't get any easier. We are all aging, and the physical demands become too much at some point. I am only 62, but my body is weaker than it should be because of the strain of the last 9 years. I have been talking to my step sons about what they want to do with their dad when I can no longer do this. All 3 of the boys say they will not try caring for him at home, he is going into a nursing home. And they are very close with their dad.
I am rather taken aback that the rehabilitation facility didn't update the family via periodic care meetings.
Home health will send a nurse to check him, at least weekly. Find your own home health company by calling some in your area and ask what in-home things they offer: Dr visits, podiatry foot care/nail trims, etc and then select the one that offers the most.
It's worth a try.
I really, really, really hope she doesn't suffer one, but if my mom has a stroke, if not a heart attack, and therapy is needed and she's in a position to where therapy can help her bounce all the way back, I'm making her do it. Period. End of sentence.
That would be a breaking point for me.
I hope if / when you might have a stroke that NO ONE says to you to SUCK IT UP.
This is so insensitive and cruel. I feel for your mother.
Remember ... the energy and thoughts you put out come back to you.
You make decisions that are in his best interest and welfare.
Of course he is sad; he is probably terrified knowing his limitations - and future (based on his cognitive capacity) being very bleak if not feeling his life is over.
If he were my father, I would get him into a facility for 24/7 care ASAP.
You indicate he needs 24/7 care - and how difficult it is since he is home.
If you do not place him, you will burn yourself and your family out and be unable to care for not only him, but for yourself.
The goal is to keep him as calm as possible.
Ask MD about meditation management.
However, to improve from a stroke, it requires a 'will' to push through and forward. It is not easy work at all. You need to realize that if he resists, there is little you can do. Just be aware of how you are taking care of yourself - or not - and make arrangements accordingly, The quality of YOUR life matters, too.
Often doing what is right for our loved one doesn't feel good - it is a letting go, a time of grieving a loss, and losing independence; feelings of guilt and the "I shoulds xxx' are in the front of your mind. Confront I SHOULDS / GUILT as offer you NOTHING positive and they do drain your energy to focus on what would be best for him.
You want to keep him as calm as possible - if he is interested in ANYTHING (trains, flowers, owls, trees, art ...) get friends or volunteers to visit him and show him photos or You Tubes, or if possible, take him out for a ride / to a park. A change of scenary will help - if nothing else, re-focus him for a short period of time. And any re-focusing is important / helpful. You never know what will click for him to decide / feel "I want to be involved in (my) life again.
* Engagement / socialization is important.
* Have volunteers read to him if that might help
* Find volunteers through universities (geriatric, social work, nursing, PT departments). This is good training for students in this field)
Gena / Touch Matters