Were you lonely right after your stroke?

[stessie]

Right before I went on vacation I attended our monthly stroke survivor support group meeting. The topic was about being lonely right after your stroke. I listened as many told about not having anyone to talk with, not having visitors, and etc. The first six months are tough and many felt they were thrown to the wolves after support at rehab and then virtually no support system once they got home. How was it for you?

[fking]

I can't say I was lonely, my first 4 months were in the hospital and rehab.They kept me busy every day. My wife came every day as well. I have to give it to her she never missed a day.

 

Then when I came home a few friends came to see if I would make it, once they figured I wasn't going to die, they stopped coming. My barber is the (only one) I still have as a friend. He even came to the house to cut my hair for a few weeks or more until I was able to get to the barber shop. He still doesn't want to charge me but I pay him anyway.

 

My church family visited too and gave beautiful baskets of goodies and money. They are still very avid about my well being. Then I found a stroke group formed by the hospital that had meetings once a month but I stopped going after I found this online site. Been here every since! :worthy:

[Guest DianneD]

I was hugely lonely after the stroke.......discharged from the hospital, I was without physical therapy (I had to fight for 3 months to even GET it), without family (I had to put my parents into care homes so I could rest), and without support groups (because of the heat here in Arizona, the stroke support group didn't meet for the summer months, so I was without a support group until September). And because my memory was shot, a lot of people's phone numbers that I routinely carried around in my head, went away. I was intensely lonely and had it not been for this website, I would have felt bereft of any comfort or information.

[swilkinson]

I think Ray was very lonely for a while. We were both working and had active lives prior to his two major strokes in 1999. He had 4 1/2 months in hospital and rehab unit to come back from being paralyzed to being able to walk out of the rehab unit. It was a long tough fight. Then of course there was a big let-down as he realised he was not going to be able to go back to work, to drive etc. It took another twelve months or so before we started to rebuild our lives.

 

An added factor for us was that I had taken my parents in as soon as Ray came home from hospital. Dad was seriously ill and not coping with my mother who had Alzheimers. Four months later came my Dad's death from cancer and I was looking after my mother still for the next two years too which made it even more of a challenge.

 

I think Ray was in denial about the reality of the situation too. He kept thinking he would suddenly get better and get another job etc. It took a couple of years to sink in that this was never going to happen and this was our "new normal" , by then he had had a broken hip and then in 2001, his next stroke.

 

We have rebuilt our lives. After nine years of post stroke living our friends and acquaintances are completely changed and we have accepted that some of our "old friends" are never coming back. We have phone calls from a few of our old crowd a couple of times a year and that is all. We no longer have anything in common with them.

 

BUT we HAVE rebuilt our lives and do have some good friends who have been through most of it with us including friends from Ray's stroke support group. Our lives are very different from what they were in 1999, probably really slowed down but the sun still shines on us and we enjoy the little things in life that keep us amused and keep life worth living.

 

Sue.

[stessie]

Wow, Sue, I am always amazed at how well you express youself in writing. It sounds as though you truly have rebuilt your lives in 9 years.

 

I do believe many stroke survivors are very lonely after their strokes, especially during the first six months.

 

Stessie

[stessie]

Dianne D., so good to hear from you. Your comments echo that of many in my stroke survivor group. I am meeting with a hospital representative on Friday here to see if we can't follow up with survivors who are recently discharged to let them know about our stroke survivor support group. I think it could help many. A person who has experienced what they are going through can help.

 

Your Arizona weather sounds good to me today. It's snowing, cold and blustery here in Ohio.

 

Stessie

[PhilW]

Interesting topic, when I was in hospital everybody came and saw me as much as they could,my wife & mum, dad alternated every 2nd day it was fair way to travel, also work mates dropped in. At rehab it was pretty much the same. Now here comes the strange part, when I came home I saw everybody once in a blue moon now. I suppose because of this, is the inital shock of hearing that you are in hospital they come, but when you are home thus thinking you are treated everything goes back to normal- its strange or its just the way Im thinking?

[dstraugh]

My first 6 months were lonely even though I was kept busy with in-home as well as out-patient therapy. As we lived out of state away from the majority of our family, I had to "adjust". The highlight of my days back then was when my daughter returned from school (she was in junior high then). As I became more comfortable with the "new" me, I learned to be more self-sufficient and to find ways to decrease my lonliness - that's one reason I began volunteering here at Strokenetwork.

[stessie]

Donna

You are a life line to many. We are glad you volunteered for Stroke Net and continue to do so today.

 

The first six months can really be tough.

 

Stessie

[bartszatmary]

My will all she can for me. But even she goes downstairs I feel sometimes like a leaper

[stessie]

Hang in there...you are still in the recovery stage. Don't be too hard on yourself.

 

Stessie

[kwaltke]

When I was comatose and unresponsive there was a virtual vigil going on without my being aware. Friends family and church members. When I became concious and a little aware they limited the visitor a bit so I could recover as time passed things slowed down a bit. When I was moved to rehab there was still enough on going drama with surgeries etc to keep things livelyl Finally I actually made it through rehab there at the Hospital and was sent home. Nothin had been set up as what to do with me. I ended back in the hospital several more times I was having either ministrokes or at the least my blood pressire would plummet and many times they couldnt detect a pulse. Flight for life was called on those. Once I was home its like everyon but my hustband disappeared, either they were exhausted or whatever. To this day my husband is my caregiver and my rock. The kids do what they can. Our one son and his wife were expectign when I had the stokes and bleeds into the brain. Soon the Baby kept them busy the other son even seemed to think well its all okay now. There is a lot more but I am not here to discourage anyone. I am just now starting to reach out a little and let others know how lost and thrown to the wolves I felt. No therapy besides that on the floor It was very difficult. I am going to be ok now.....But I was so lost for so long...... I feel even the medical end dropped the ball. Karen

[stessie]

We are glad you found Stroke Net. I went back and read your original post. You have come a long way, Karen. You should be very proud. It can indeed be lonely right after you get home from a stroke. It's almost as though everyone thinks now that you are home, all is okay. This is not the case when you are new to your situation and trying to get around the house. Plus, I recall what an ordeal it was to take a shower. I had trouble washing my hair and was reluctant to ask for help so I spent way too much time in the shower trying to get shampoo out.

 

When you have time and feel like it, please tell us more about your situation. We are here to listen.

 

Stessie

[kwaltke]

We are glad you found Stroke Net. I went back and read your original post. You have come a long way, Karen. You should be very proud. It can indeed be lonely right after you get home from a stroke. It's almost as though everyone thinks now that you are home, all is okay. This is not the case when you are new to your situation and trying to get around the house. Plus, I recall what an ordeal it was to take a shower. I had trouble washing my hair and was reluctant to ask for help so I spent way too much time in the shower trying to get shampoo out.

 

When you have time and feel like it, please tell us more about your situation. We are here to listen.

 

Stessie

 

Not that it matter why we have stroked once we have.... but I was in the hospital for something totally unrelated, They had to do something like a central line or something like that. End result I sttroked and had two bleeds into the brain immeditately followkng the procedures. I was out of my head ... did not know what I was doing and they transfered me to another hospital when they realized as that one did not handle bleeds into the brain or strokes. Then I went unresponsive i might move my eyes or something but after the bleeds into the brain I guess that was pretty normal. Mine was largely Bilateral althoug the bleeds were on the left of the brain. I was totally paralyzed once things started showing what would be the affected sides. Just as i was regaining any conciousness my lungs were I forget exatly throwing hundreds of clots to my lungs of visa versa They had to do surgery to put it a stent that would capture all the clots now they could catch the ones from the stent up but not the stent down so I was in critacal care again. Finally they were able to start working with what was left. I was able to leave the hospital 4 mos later walking on a walker. No perpial vision I was a mess. And then came the flight for lifes as I would stop breathing and felt like I was restroking. They were ischemic attackes I guess. Once home I was alone as Bill had to work No choices. I was left alone as there was no coverage and no choice. Of course by then I was on Coumadie for the clotting factors. Its been a journey in a foreighn land that is really not over . We had no insurance as I had lost my coverage back with an auto accident. You cant imagine the nightmare thhat has been. And still we have not got me covered under medicaid or Medicare. They finally two weeks ago granted my SSI. They took it away 10 days later. I understand that will take away my battle for Medicare/Medicaid?!? I cannot get health insurance at any price due to the fact I have had some health problems. I am the mom right I have to be strong for all the family well it all came apart this summer as my care giver is worn out to a frazzle and he has his own pain. He has Palindromic RA and he is Post Polio. Then he had to have surgery and I became his care giver. Anyway Me the strong one broke and was I will admit suicidal. Now I look back and cannot understand how distorted my thinking had become and how unmanageble our lives were. But I have to accept to get help I guess we would have to just give up and quit working and go on welfare or something. I cant do that We cannot do that we are too proud I guess. I am not saying the kids are never there for us, But due to inlaw problems they have many times not been or they are in trouble in the other side of the family. Brothers married sisters. And if you can believe the reason for the inlaw problems are over they had the girls and the parents wanted the cnildren named after their family name not ours and this has been an issure they will not let rest for over 15 years. When the other son and his wife had the baby after my stroke it all started up again. They waned that baby to carry their family name so they wont be without someone to carry on their family name How hideous it is. The oressure on me over all this set me up for a restroke So its not benign issues . After all this it is still worth it and Nothing will ever make me doubt Gods love for me. Where am I at right now. I am ok I have the scootie and I use the cane when I can although I am not stable on it really. Life is good and it goes on. Also the LAST thing I want or can handle is Pity. I take it as it comes and one way or another we shall find the way. I feel I can say that here and all of you will know what I mean. We are survivors!!

[Vivid-Dawn]

Yes, and no.

 

My in-laws (now "ex-laws"?) knew I have health problems, but since it's nothing "serious", always think I'm just finding excuses to be lazy. The stroke had no lasting effects, but it was still dismissed as no big deal. "Just push yourself" is a phrase I heard waaayyy too many times, when I was truly struggling.

Yeah, I like being constantly weak and tired for the fun of it... *rolls eyes*

They would insist on making me go to outtings and parties and all that social junk, even when I tried to tell them I wasn't up to it. And then they'd get upset when I wasn't being active, and would just sit on a couch or a chair off to the side of all the activity.

 

On the other hand...

My own family was very supportive, and didn't mind if I 'whined' about stuff ever so often. They're patient with me, if I have to take things slow sometimes. Of course, with the other health problems, so they're probably just used to it! LOL

If I don't want to go out (which is often...I'm just not a social person), they leave me alone. I also have a new best friend that seems to understand. She knows that if I say I'm tired, we stop and rest. Or she'll ask if I need a rest, if I start getting sluggish. In fact, she says I try to do more than I should, sometimes! (which is true...old habit from the ex-family, I guess).

[kwaltke]

Isuppose I could understand In Law Difficuties. These are not our inlaws but our sons wifes parents Over the name of our precious grandchildren. I could let you know the extent of the difficutiies but I suppose admitting my heart had no pulse at one point would prove I am just way to sensitive to the curves in the road on the path of life.

[Little Jo]

Hello MY NAME IS Jo .AN I WAS THE SAME WAY but i didn't have they one to come to see me .but my husband an my god child an one of my friends that i grew up knowing . I thought so loney Idon't have meny friends that i can call my friends . Went to a subport goup when i was in the hospitial .But not sense iv came home we don't get know one over . they wont Randy to come i just stay home most of the time . un less we got to go in to town. Don't talk to much people .becouse they think im weerd. SOim at home a lot . People ask Randy how im doing but they don't come . So i read a lot an do a lot of resurch on strokes an things like that. Icrochet a lot when im in the mood to. :yadayada: Iknow i cant just be happy all the time BUT SOME TIME WE JUST HAVE TO LET IT OUT . Im better now sense . i found this site . I STAY on here or i go to myspaces or i go to pogo an play games there . All i do know is IVgot god on my side an he has been a good friend to me . AN AS long as i have him cant .know body hurt me . Be kind to one anouther . God bless us .

 

 

JO

[kwaltke]

JO I thought I had a lot of friends and a few youd trust your life with. Now I am seeing the other side. I think my being different than Id always been sorted out the real friends from those who are uncomfortable with me now. SrokeNet is my security blanket . I know HERE you all understand. I dont know what Id do without you all. I consider you all heaven sent. God knew my need and met it. Hugs

[HostStephen]

My wife was always there and I think I remember a couple of people come to the hospital, but I am not sur.( The stroke wiped away many of my memories). After I got out of rehab there was no local stroke groupI coul go to. I am lucky I found What turned into the strokenetwork. That saved my life. Just having some one who had some idea of what stroke was like. Plus using the computer was good for me.I still type one finger for the letters and anouther for the shift key, but I am typing!

hoststephen

[Mary Goldberg]

I was very lonely for the first year. It's been over 3 years and I feel I am much, much. better. I joined a senior center and go twice a week to get out of the house. I had a very good friend that I truly miss but I guess I'm not the same so only see her occasionally. I forgive her for her ignorance. I drive a little so go to a place called Curves 3 times a week for exercise. That fills my week. I watch too much television but it keeps me company too. My family is very supportive so I guess I am loved and blessed. I guess it gets better as we grow older. I had my stroke at 58 years old so I am the youngest member of my senior center. Recently I became voted in on the Advisory Board. I was truly shocked but accepted the position. Another step to my recovery I guess.

[kwaltke]

I had my stroke at 56. I am so grateful that my daughter in law was expecting with thier first baby. They would hold the ultrasound and talk to me about Kaylee and how she was counting on me. Somehow I beleive my precious grandaughter saved my life before she was born. Even though I was listed as grave and terminal.

[Le Hermite]

Hi Stessie, Folks....

 

In the beginning...lots of visits.......

 

Now am approaching a year, and things are shuffling out.......

Ya find out who were friends and who were acquaintences.....

 

I have a number of on line friends, and I found Strokenet last May....

 

Way I see it, if I make more new friends now, the ground rules will be in place....

[stessie]

Ann

My thoughts are with you. This past evening I was at my 86 year old mother-in-law's house. She was telling me how bad she felt and that nothing seems to work. Of course, she sits in a chair all day long and watches CNN non-stop. She has never tried a Senior Citizens group or even tried to connect with others. For the first time since my stroke in April of '07, I told her that I, too, was in pain. She told me she didn't think my stroke had done anything other than to make me lose my balance and limp. She was amazed that I had any other deficits because I am so "positive" all the time. I told her I practice the motto than any additional day above ground is one more good day for me. I almost felt better after telling her each day can be a struggle for me, too.

 

 

Please hang in there and let us know how your doctor's appt. goes. Happy New Year and my best to you in '09.

 

Stessie