My dad had a stroke on Friday - I am looking for advice not medical

[carpediem]

advice but advice to a family member of a stroke patient. My dad lives alone and had a stroke, actually according to the neurologist a small shower of clots resulting in multiple small strokes. He is a retired physician and as such has always played the role of patient advocate for anyone in our family who has been sick. This time he is unable to play that role. The effect of his strokes are in the expressive area of his brain and also pronounced weakness in his right arm (he is right handed). He has recovered some of his speech capabilities since Friday, on Friday he could only pull about 10 words out now he is using broken sentences, but still has difficulty remembering or pulling a word out of his head. He seems to understand almost everything that is being said to him, it is the answering that is difficult for him. He doesn't want anyone to know that he has had a stroke, including his family, I am the only family in the immediate area so I have been kind of living at the hospital being his voice. Because although he can answer yes or no questions, the nursing staff doesn't always have the time to wait around for him to think of his question or concern.

So here is the kind of advice I am looking for, and I figure that there are so many people on this board and it is so active that it may be a good place to come looking for it, I am hoping that someone who has been through a similar situation can simply help me know kind of what to expect timeline wise, what kind of long range plans I should be making, what questions I should be asking, etc. I have asked the neurologist timewise and they are saying 10 - 14 days in hospital, but giving me no indication of what may come next. I need to make some plans I have a family, kids in elementary school and work, the most fortunate thing is we work out of our home and we can do that from anywere with an internet connection. So if anyone has any advice for me or something you've learned having gone through this I'd really appreciate any help anybody wants to give. Thanks!

[GreenPartyVoter]

1. I don't have any advice but I wanted to express my well-wishes for your dad. *hugs*

[carpediem]

3. thanks for the well wishes n/t

.

[SPKrazy]

2. is he eligible for a stroke rehab

in a rehab hospital?

talk to the doc and the social worker there

that may be the next best step if he is able

otherwise you need to talk to them as well as far as planning home care.

sitters are expensive if he needs that

or he may have long term care insurance or enough assets or finances to pay for that if he needs it.

Stroke recovery is variable and depends largely on how soon he was treated and what kind of treatment he got

sounds like he is recovering things quickly though

:hug:

good luck and good vibes to you

[carpediem]

4. thank you for the advice - I am going to see if I can find a

social worker at the hospital tomorrow. I don't know about rehab hospitals in the area, so I'll have to look into that. We only live about 10 minutes from him and may be able to stay with him for a while to help him out as needed. Although I also need to not disrupt my kids lives too much. I am also trying very hard not to scare them about what is going on. Thanks for the suggestions I am definitely going to ask to talk to the social worker tomorrow.

[yellowcanine]

5. You should be asking the medical staff these questions. If they can't give you answers they should

be able to refer you to someone who can, whether it be social workers, physical therapy, whatever. There should be some kind of rehab plan developed that will make sure the patient gets the intervention necessary to progress toward a full recovery.

[carpediem]

7. I have been asking and so far the answer i've gotten is

they will keep him in the hospital until they can find what has caused the strokes. They did an MRI which showed no clot anywhere in his head and neck, tomorrow they look at his heart by doing a TEE. I have no problem with them keeping him until they know what caused it, but when I asked what's next, they told me let's just wait until we have an answer. Also fine on the surface, but as I am the only family member in the immediate area I'd like to know what I should be expecting. I guess I'll just keep pressing, and following the advice I got earlier to look for a social worker in the hospital who can help me. I am just feeling a bit overwhelmed, he has always been so strong ( I'm not talking physically ) and it is very weird to see him so vulnerable. He is currently receiving daily physical and speech therapy which is very helpful and they left the PT instructions in the room so I was able to work with him on them. I will ask about a rehab plan. Thanks.

[Lars39]

6. Social services should be able to help you out.

I'd advise as much daily rehab(All 3 types) for as long as you can get for him in a hospital rehab setting. Rehab in a nursing home can be kinda tricky...the nursing home staff can be *very* aggressive if they decide that they want to keep him. My dad was kept in a wheel chair for most of the time until we made it absolutely clear he was coming home...then all of a sudden they made a big push to get him walking with a walker and then cane.
Their tactics were infuriatingly unethical, to say the least.
You might be able to write his questions down and then go hunt up the answers from the nurses or doctors, or tell them his concerns so that they may properly address them.

:hug:

[carpediem]

10. Thanks for the info about the nursing home rehab programs

I was thinking that may be a way to go, but I can see what you mean, they may be motivated to try to keep him there. He would not be able to handle that thought right now. And according to his doctors, they think he should recover 60-80% of the function he has lost, just over time.

I have been acting as his voice as much as I can, he tells me things then I communicate them to the medical staff, the frustrating thing has been that I don't always understand what he is trying to tell me. But I can usually narrow it down by asking a bunch of follow up yes or no questions.

[Lars39]

11. Hopefully he'll continue to make good progress.

If you have brothers or sisters, try to get them involved in any way possible. It's too easy to burn out if you are the only caregiver, even if you do only live 10 minutes away.

[carpediem]

14. my sister is planning on flying in once he is out of the

hospital to "spell me". There is really only the 2 of us. He has sisters, but one is far away and the other recently lost her house in a fire and is otherwise busy and he won't let us tell them so far. I am going to work on convincing him that people who he is close to need to know, but I am expecting an uphill battle with that.

( I was on the phone with my sister which is why the delay in response)

[Hoof Hearted]

8. It will take about a year before the two of you (you and dad) know where you're going to be

longer term. Be patient and know that progress will be made in fits and starts. Sometimes he will seem like he's sliding backwards a bit, but that's all part of it. He will amaze you with his ability to heal, and adapt.

We moved my mom into a duplex with us. We can care for her every day and she can still maintain her independence. Her stroke sounds nearly identical to your dad's. She is doing very well now.

I know it's scary. Keep your hope and optimism up and keep encouraging and praising your dad. It will get better.

:hug:

[carpediem]

12. thank you for the kind and encouraging words

I know this will be a long term recovery. My dad seems to be in denial about that (I don't blame him, I would want to think that next week everything would be better too) he keeps talking about needing to go home. I have already been amazed by his progress, but one of the complicating factors is he doesn't want anybody to know. I think he was actually upset that I told my sister who lives out of state that this was going on. I am trying to "break it to him gently" that things aren't going to go back to normal very soon, but it is difficult. I am afraid he will get depressed if he gets hit too hard with the reality. I am going to ask at the hospital tomorrow if they have a psycholgist who could come and talk to him sometime in the next few days to help him.

I am very hopeful and optimistic about the long term, I am very worried about the short term. I have been encouraging him, but I find I am walking a bit of a tight rope between being encouraging and sounding like I am speaking to him as a child. I am very conscious of it and sometimes struggle with how much I should do or say. I have been careful to let him answer the docs q's as often as possible and answer only if he looks to me for help. I am trying not to break the dad/daughter relationship rhythm, if that makes sense, by letting him make as many decisions as possible and keep his independence as much as possible. I guess I am having the biggest problem with the role reversal. It feels very uncomfortable.

[Hoof Hearted]

13. Those are the stages of grief at work. My mom went through those too.

She was the caretaker, and known for her love of conversation. The stroke changed that. Her aphasia sounds much like your fathers, and she spent some time wrestling with denial too. Even with a pronounced right side deficit, slowed reflexes and difficulty reading some letters and numbers she repeatedly asked her doctors when she could start driving again. Her GP finally had to tell her it just wasn't going to be a good idea, her driving days were done.

You will each have to allow yourselves to go through the grief process. You have to let yourself mourn the loss. Time and circumstances will dictate the parameters of this new reality and new phase of life for both of you. That's o.k.. It's totally normal and natural to feel uncomfortable while you adjust and you both find your footings in this new landscape.

Some subtle personality changes are likely. My mom is a little more abrupt, but not in a bad way, it's just that she has to get thoughts out while she can still make the words to express them. She is also more organized than she used to be before the stroke. That's been a bonus for her.

It sounds to me like you are doing everything right. Keep up the good work and feel free to PM me any, ANY time. :hug:

[carpediem]

15. Thank you so much for your encouraging words

I am going to keep you in my contacts so I can pm you. As I have said I am feeling very overwhelmed and confused about this. For now I am going to bed because I need to be back at the hospital tomorrow for the TEE test. Thank you for your encouragement.

[LibertyLover]

9. If you continue to get evasive answers or no answers

contact the ombudsman or the patient representative. Most hospitals of any size have them these days and they are charged to work with patients and their families to cut through the garbage and get answers. Good luck - my mom had several TIAs and it was a scary period in our lives. I truly hope that everything resolves itself well and you dad gets the proper care and rehabilitation for a good recovery.

[murielm99]

16. Ask the hospital if they have a speech pathologist.

Sometimes they can give you an idea of what to expect, or what kind of treatment, if any, should be done.

It may not seem like that is what he needs, but they can give you some ideas.

My brother had a small stroke, and then another one a bit later. They sent him to a rehab hospital for a few days for an evaluation. The speech pathologist saw him as a part of a team who worked up a treatment plan for him. He did not need the speech pathologist. He had some physical therapy and learned to live with the slight disability he has left.

Good luck to you and your father.

[xchrom]

17. you've received some very good advise -- especially

the part about getting a social worker -- you'll need one.

but i want to wish the best -- this won't be easy.

all good health for you and your dad -- and everyone you care for.