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Stroke
Old 03-26-2009, 09:34 PM   #1
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Stroke

Little did I know when Nords posted his "My Stroke of Insight" book report last month that I would have an opportunity to gain real world experience dealing with a stroke victim.

Ten days ago my FIL, a widower age 89, suffered a stroke. Up to that time he was living independently and in a stroke of good luck (pun intended) my BIL was visiting him at the time and was able to immediately summon medical help. He was taken to a small town emergency room and a couple of hours later was transported to a regional hospital with a specialized "stroke ward".

He suffered significant damage to the left side of his brain. His right side is paralyzed, he cannot speak other than a mumble, and cannot swallow. After a week in the stroke ward battling aspiration-induced pneumonia and heart problems, he improved enough to have a PEG tube surgically implanted so the gastric feeding tube could be removed from his nose. He became significantly more alert, and visibly frustrated and depressed about his situation. He spent much of Wednesday trying to figure out a way to get out of bed. Fortunately he was unsuccessful.

Late Wednesday he was discharged from the hospital and transferred to a skilled nursing/rehabilitation facility. It is a short term, transitional facility designed to begin the rehabilitation process with a structured, intensive program - think geriatric boot camp. He is expected to be here for one to four weeks, when he will almost certainly go to a nursing home. Whether it is one with continuing rehabilitation services or not will depend on his progress in the coming few weeks.

It is very interesting to attempt to look into the mind of someone who has always been fiercely independent and self-reliant and attempt to understand what they must be feeling as they become aware they are now totally dependent on others - and cannot speak.

A little background: FIL is part of a vanishing breed - the American cowboy. He came to TX from Ohio in 1937 (age 18) and found a job "where it was warm, I could ride a horse, got fed and got paid. I though I'd died and gone to heaven." He worked on ranches for 71 years, with a break of 10 years or so during the 1940's when he worked as a welder. (A back injury suffered while breaking horses prevented him serving in the military so he worked in the shipyards as a welder building Liberty ships.) He didn't "retire" from ranching until he was almost 88. Unhappy after "doing nothing" for more than a year, last fall he talked a local rancher into hiring him to feed his cattle. After three weeks of handling 10 bags of feed every day, each weighing 60 lbs, he admitted he couldn't do it and "retired" again. Did I mention FIL is 5' 6" and weighs 130 lbs? Tough as nails - I saw him do 150 sit-ups - at age 75!

This is the guy who, earlier this evening when we walked into his room and asked how he was doing, closed his eyes and turned his head away from us. The guy who smiles at many of his visitors, is somewhat cooperative with the nursing staff, but either ignores or looks away when DW or I walk into the room or talk with him. (We've always had a good relationship with him prior to this.) The only consistent response we've gotten from him is when we tell him we're leaving and will be back in a little while. He attempts to speak and the tone is not pleasant - easily interpreted as "I don't care if you never come back, just let me die." But who knows.

The next few days and weeks will be interesting I suspect. DW has been with FIL daily since he suffered the stroke. BIL returned home on Saturday but will return on Sunday to spend next week with his dad and allow his sister a break. Unfortunately she plans on spending much of her down time researching and visiting nursing homes.

If any of you have experiences with elderly family members who suffered strokes, I would appreciate any insight and advice.
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Old 03-26-2009, 10:02 PM   #2
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I don't have any experience with a family member having a stroke, but I need to let you know how sorry I am that you all are having to deal with this....
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Old 03-26-2009, 10:18 PM   #3
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I haven't had a lot of experience with stroke victims.

But, the fact that he smiles and is pleasant to others, but won't look at and ignores you and your DW, suggests to me that he is embarrassed to be seen by his family in such an "incapable" state.

Don't know what you can do about it, except to try not to let him see you pitying him.

Sorry that this has happened.
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Old 03-26-2009, 10:40 PM   #4
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Wow! What a great guy to have in your family. Don't forget- he may get much better fairly quickly.

My sincere best wishes and my prayers are with you and your wife, Wahoo.
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Old 03-26-2009, 11:14 PM   #5
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REWahoo,
Very sorry, best of luck to you and the family. Unfortunately, I have no firsthand experience to share, but will look forward to hearing and learning from your story as this unfolds. Your FIL sounds like quite a guy.
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Old 03-26-2009, 11:14 PM   #6
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I trust you are aware of the Medicare website that provides information on nursing homes. Be sure to review the last two inspections by your health department. We discovered that "pretty" does not correlate with good care.

Many years ago my grandfather suffered similar stroke. He got very depressed. Be sure to bring in a professional who can help him deal with that.
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Old 03-26-2009, 11:49 PM   #7
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REWahoo,

Sorry to hear that. I second most of the comments. My grandfather had one at 94 and was very upset that he could not do the simple things in life, like shave himself. He too suffered from depression. I hope that this works out for you. My advice is to take it one day at a time.
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Old 03-27-2009, 12:41 AM   #8
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I wish your FIL and all your family good luck with this situation.

I don't have any experience with this yet, but I may soon. My mom has had a couple of very minor TIA episodes, and is currently scheduled to talk to a vascular surgeon regarding what appears to be Peripheral Artery Disease. She will probably need surgery but is already saying she won't do it. I suspect she'll change her mind when she hears about the alternatives.

I was visiting her yesterday (she just got the news the day before) and she's very depressed. She told me that if she gets severely damaged she doesn't want to go into a nursing home, and that she has plenty of pills saved up to "take care of it herself". It's all very scary. All of us want to live a long and healthy life, then "Boom", out go the lights". But it doesn't always work that way. I can't imagine anything worse than having a functional mind trapped in an unresponsive body.

Please keep us updated on the situation. I hope things turn out as well as they can.
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Old 03-27-2009, 07:35 AM   #9
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Sorry to hear of FIL's stroke. My father had a stroke in 1994 when he was 74. He could swallow after a couple of days, lost his left side mobility (his dominant side). Couldn't speak for at least a week, which was very frustrating to him. Also very emotional, which is normal for stoke victims. It's kind of like the part of the brain that controls keeping emotions under control isn't working as well and you see a lot of mood swings. Of course, it's the ones that I normally didn't see that I remember - crying, anger (I think it was frustration from having to depend on so many others for things; the mind was still sharp just couldn't get the body to work). Medication for depression maybe appropriate.

This is what I recall for treatment. First decide who is going to be the primary person overseeing his care (DW or BIL). That person (caregiver) will need to be there daily to be there for FIL but also to push FIL in doing therapy exercises (it gets frustrating for them and they need encouragement (sometimes some b*tching). Also, caregiver is the frontline to FIL receiving good care (nurses, therapists, and aides are usually good but they can be overwhelmed and miss/forget things). We had my father moved to rehab facility near us (was there for about a month); then he was moved to nursing home (again near us; my mom moved in with us for interim (about 3 months). Then he was moved back to nursing home near their home for a couple more months.

It takes time for nerves to regrow, so recovery is not quick. Takes about 6 months for majority of what is coming back to come back, nerves take that long to regrow. But you should have a good idea well before then as to ultimate mobility / limitations, about the time he gets out of rehab facility and has moved to nursing home (he won't be doing everything but basics are starting to show, my father was only able to take a few steps between rails at the time he left the rehab facility and was eventually able to walk without any type of assistance (cane or walker).

It will be frustrating, especially early on, as no one can tell you how much or what is permanently impaired. The good news is he will get better and since he got treatment quickly, damage was minimized.

Finally, don't forget about finances, someone needs POA and Healthcare POA (Healthcare POA needs to be primary caregiver) if those haven't been done already. Either contact an attorney or brush-up on state laws regarding medicare coverage/ co-insurance (part B) and possible medicaid eligibility issues for future.

Good luck
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Old 03-27-2009, 07:53 AM   #10
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We've corresponded about this a few days ago, but let me add my best wishes for his return to a decent quality of life after rehab. I think one of the tricks to pulling this off is to set goals that are realistic.

The speech thing ("aphasia") is hellish for many patients but can be worked around (for example, he can be given "permission" to not even try to speak around people with whom he is self-conscious - scratch a few notes instead).

Anyhow, he's lucky to have his family nearby and involved.
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Old 03-27-2009, 08:07 AM   #11
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A tough situation. I have not had to deal with a stroke in the family, but my dad's situation was not much better. He was loaded up on morphine his last few years due to rheumatoid arthritis. Almost killed my mother trying to take of him. They were from the old school of 'we take care of our own, no outside help'. So I sell my house on the golf course to move close by. He was miserable and eventually had a seizure that did him in.

All I can suggest is get all the help you and your family need. Not only is it tough on the stroke victim, it's tough on the family. Best of luck.
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Old 03-27-2009, 09:52 AM   #12
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So sorry to hear this news.
I can't be of any help - no experience with stroke.
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Old 03-27-2009, 09:54 AM   #13
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A strong second to F-One's experiences:

Quote:
This is what I recall for treatment. First decide who is going to be the primary person overseeing his care (DW or BIL). That person (caregiver) will need to be there daily to be there for FIL but also to push FIL in doing therapy exercises (it gets frustrating for them and they need encouragement (sometimes some b*tching). Also, caregiver is the frontline to FIL receiving good care (nurses, therapists, and aides are usually good but they can be overwhelmed and miss/forget things). We had my father moved to rehab facility near us (was there for about a month); then he was moved to nursing home (again near us; my mom moved in with us for interim (about 3 months). Then he was moved back to nursing home near their home for a couple more months.

It takes time for nerves to regrow, so recovery is not quick. Takes about 6 months for majority of what is coming back to come back, nerves take that long to regrow. But you should have a good idea well before then as to ultimate mobility / limitations, about the time he gets out of rehab facility and has moved to nursing home (he won't be doing everything but basics are starting to show, my father was only able to take a few steps between rails at the time he left the rehab facility and was eventually able to walk without any type of assistance (cane or walker).
When my father had a stroke (now largely recovered) it was amazing how many mistakes and lapses in his care there were that would not have been caught except for a family member being there to monitor everything.

Likewise, once he moved to therapy, he noticed that patients quickly divided into two groups. Those that worked (and it is hard hard work) at their therapy, sometimes even being pushed to do so, got better. Sometimes much better. Those that shied away from the hard work of doing something that used to be easy for them or that withdrew and did the least they could to get by did not see much improvement and sometimes even got worse. In his rehab these were mostly people with serious motor issues, so those that didn't fight for recovery were mostly heading for permanent nursing homes. He and the others who pushed themselves usually stayed 6-8 weeks then went home.
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Old 03-27-2009, 10:10 AM   #14
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Your FIL sounds like an amazing man--it must be hell for someone who was "fiercely independent" and whose whole life was spent doing physical work to now be immobile. I hope his geriatric boot camp goes well for him and he recovers at least enough to regain his spirits, and I hope you'll keep us posted on his progress. My thoughts are with your DW and you too.
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Old 03-27-2009, 10:11 AM   #15
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Old 03-27-2009, 10:43 AM   #16
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Thanks to all for your input - please keep it coming.

We are in complete agreement with those of you emphasizing the importance of carefully monitoring his care. Although the facility where he is currently undergoing rehab and evaluation is 200 miles from our home, we were happy to learn they have an RV park on site. We've put the motor home to good use and are parked only 100 yards or so from his room. DW and I are in an out all day, monitoring his care and attempting to boost his spirits. We plan to alternate weeks here with my BIL to keep a very close eye on his care and doing what we can to support him emotionally.

Growing older, your description of two groups in therapy coincides with what we have been told by the staff here. That's why the next few days are so critical to determine his long-term outcome. He's showing little interest in working towards improvement at this point. We're trying to find a way to help him reach within himself and find the motivation to want to improve. I don't know anyone who has more grit and determination than my FIL but he's given no indication he's willing to do what it takes to get better. The staff here has impressed us with their understanding of what he is going through emotionally and are working with us to encourage him.
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Old 03-27-2009, 10:48 AM   #17
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Originally Posted by growing_older View Post
A strong second to F-One's experiences:

When my father had a stroke (now largely recovered) it was amazing how many mistakes and lapses in his care there were that would not have been caught except for a family member being there to monitor everything.

Likewise, once he moved to therapy, he noticed that patients quickly divided into two groups. Those that worked (and it is hard hard work) at their therapy, sometimes even being pushed to do so, got better. Sometimes much better. Those that shied away from the hard work of doing something that used to be easy for them or that withdrew and did the least they could to get by did not see much improvement and sometimes even got worse. In his rehab these were mostly people with serious motor issues, so those that didn't fight for recovery were mostly heading for permanent nursing homes. He and the others who pushed themselves usually stayed 6-8 weeks then went home.
My MIL had a severe stoke about 15 years ago. It left her paralyzed on the left side of her body. Our experience was much like that quoted above. The therapy is very hard work and often quite painful. Those who were determined and stuck with the therapy showed the greatest level of improvement. Unfortunately, my MIL resisted the therapy due to the pain and showed very little improvement. We all had such high hopes for her to improve and were very sad when we eventually realized she would never get much better.

She lived with my SIL and her husband for about 10 years. Even though they hired someone to help, caring for her was very difficult and stressful for everyone involved. My MIL showed personality changes and became very emotional. She also behaved in unexpected ways such as using inapporiate language. Before the stroke, she was always good natured and ladylike so it was quite disturbing to see how she changed.

My MIL is now 90 years old and lives in a nursing home. It is important for her to have regular visits not only to provide her with companionship, but to monitor the care she receives. She does get depressed sometimes but loves to have visitors, especially if they bring her a little gift or a sweet treat like cookies or candy.

I wish you and your family the best during this very difficult time.
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Old 03-27-2009, 11:38 AM   #18
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I have nothing informative to add, but just want to say best of luck to your FIL on his journey to recovery.
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Old 03-27-2009, 05:40 PM   #19
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REWahoo,

I am so sorry that you are going thru all of this. Your FIL sounds like a wonderful guy.

I don't have much to offer except to say keep your chin up and be there for him. Sounds like that's what you are planning.

My mother had a major stroke at the age of 73. She lived only two weeks before she died of heart failure.
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Old 03-27-2009, 06:50 PM   #20
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Almost everyone on my mother's side of the family died from strokes.

Mother died about 6 weeks after her stroke (~age 81), she had a lot of other problems and spent those weeks in a nursing home.

Take this as you will: Does he want to be rehabilitated? At 89, how much better is he going to get? Can he be allowed to answer that question for himself without coercion?

I talked to Mother while she was in the hospital and she knew who she was and where she was, and seemed to accept that she wasn't going to be alive much longer.

Any way, best wishes to all of you.
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