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Sephardicina

Husbaand had Stroke 22 months ago

29 posts in this topic

My husband had a stroke 22 months ago in the doctor's office where we were for a birthday party that they have for their patients each month. Since it was not an "office hours day" the doctor who was there did not know us but as a retired registered nurse I took one look at him and knew he was having a stroke. The doctor took his blood pressure which was sky high and told me to take him home and bring him back after the weekend to have his pressure checked again. We left the office and instead of going home I drove directly to the hospital emergency room. He was taken directly inside after I told them what was happening and it took almost ten hours but his heart rate was brought back to normal. He was in the hospital for four days and in rehab for three weeks. He had home physical and occupational therapy for a month and then because of the health insurance plan we ended up being sent to a place for physical and occupational therapy that was awful and nine months time was wasted. The only good thing about it was it was five minutes from our home.

This year we changed our insurance and I found a therapy place that since March, 2017 has brought about a great deal of physical improvement. My problem is that we both at times are very depressed because prior to this incident we had both been volunteers in our community and constantly on the go. Because we were born and raised in NY people there don't know the meaning of the word "slow" and despite the fact that we now live in Florida my husband has a problem with that concept. He gets frustrated that things are not happening quickly enough and I don't know how to convince him that he is making progress. Consequently, we get into arguments about it and I find myself wanting to run away because I feel I can't deal with it. I have done next to nothing for myself over this period of time even though I know I can leave him alone but I almost feel guilty if I do something for myself. I need help to get my self-esteem back in order to help him continue getting better. Thank you.

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Hi and welcome to StrokeNet, Ina. 

 

I'm a stroke survivor, but understand (to some degree) the difficult role of being a caregiver.  Recovery from stroke is a long process, and the necessary patience is not an easy pill to swallow.  I'm glad that you realize the importance of your own health while providing care to your husband.

 

Steve Mallory, the creator of StrokeNet, would recommend that you read through the Stroke Caregivers Handbook which is an additional part of this site.   Unfortunately, I don't know how to replicate his fast and easy way of leading you to this handbook.  Soooo, here are the lengthy instructions:  Click on Quick Links, and from the menu you'll see, click on StrokeNet Websites.  From this menu, click on Stroke Caregiver which will bring you to the handbook.  It's 32 pages long so you may want to print it.

 

There is also a caregiver chat on Tuesday evenings at 8 p.m. (EST) where you can obtain helpful advice from other experienced caregivers. 

 

I hope this helps, Ina.  :hug:

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Lin: Hope you are doing well and thank you for your reply. I will try and look at Steve Mallory's handbook and see if there is anything in that is useful for me. My husband is doing better now that I have gotten him to a physical and occupational therapist that knows what they are doing. The initial therapists at the rehab were wonderful and gave him the confidence to believe he would get well. The therapy place we were sent was awful and I could see that they had no experience with stroke patients nor did they inspire confidence in either one of us.

 

I do know that I have to take care of myself but I am so physically and emotionally drained after 22 months that it has become an effort to do anything other than what I have to and that was never what either one of us was like. We are also considering counseling but right now I think I am so depressed that I don't hold out much hope for that either. It is hard to go from being two active people to having more doctor and therapy appointments that "fun appointments". I also have PTSD from being a first responder at the 9/11 World Trade Center disaster as was my husband and many other volunteers.

 

Thank you for listening At least I know we are not alone.

 

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15 hours ago, Linnie said:

 

Steve Mallory, the creator of StrokeNet, would recommend that you read through the Stroke Caregivers Handbook which is an additional part of this site.  

Lin, you are spot on!  The handbook was actually written by our group of experienced stroke caregivers for the new stroke caregiver.   Here is the URL: http://www.strokecaregiver.org/

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I concur with everyone above. You were very wise to go to the hospital. Maybe you both should volunteer again. Some hospitals are wonderful for survivors to work at. I did and it was nice and many of the staff were understanding and it helped my self-esteem. And you could continue with yours. May I ask how stroke effected your husband?

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Kelli-thank you for your response. I waas a nurse exactly what was happening with my husband and that was why I chose to do what I did. The doctor who saw him in the office that Friday called me on Monday morning and wanted to know what happened. I told her he fooled her and she was not smart enough to figure it out or even to listen to me. Then neurologist who also saw my husband the next morning told him I saved his life. As far as his disability from the stroke initially he could not walk or use his right hand. He never lost his ability to speak or think but because this was the first time in his life that he had been ill as such other than maybe a cold or flu he had a very hard time dealing with it. He was really good with the nurses and aides in the hospital and in rehab but when he got home he had me running ragged. Things on our bed that have been there for years-pillows, quilts, sheets, were no good. Food that he always liked he no longer wanted or ate very little. It took almost three months to get through these issues. I also could not get a decent night's sleep for almost three months and was probably going on sheer adrenalin. By March of 2016 he began getting better and had started to use a cane to walk and he wanted to go out. He was also again volunteering for the Sheriff's Department as a volunteer dispatcher which could be done from home. In April, 2016, on our way out he lost his balance when I had my back turned and fell. It took sometime to get him back to himself again. I am involved in Jewish Genealogy and I have gotten my husband also involved in it and working on a big project for someone I know in Princeton, NJ. We do go out more now and the occupational and physical therapists he is now seeing have helped him to rebuild his confidence. Because he held the position of volunteer dispatch captain and volunteer major for the Sheriff's Department people still come to him for advice and that has helped tremendously. We both resigned from the Sheriff's Department only because of the political nonsense that exists. I also believe that his medication needs to be adjusted and he has an appointment with the cardiologist next week and we hope to get that accomplished. I need to be able to go to our clubhouse to exercise and swim and relax for an hour or so but I think I have been so affected by this whole situation that I can't relax without being afraid that something else will happen. I know it is irrational and I don't know how to deal with it. Any suggestions would be appreciated. Thank you.

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Sephardicina, you will need to pace yourself, caregiving is a marathon, not a sprint.  I looked after my late husband for twelve years, through strokes, infections, injuries as a result of falls etc.  It was a tough life and to begin with like you I was constantly afraid of what would happen next.  In the end I realised I had to appreciate every good day, and whatever happened just get up each morning and go on with the day.  It was hard at first living one day at a time but it avoided me going mad from overthinking.  It is a hard way to learn to value each day, but you have that extra time with your partner and that is a blessing in itself.

 

 I don't have any real advice except to learn as much as you can about the life of a survivor and caregiver, there is a lot of information on here.  And if you can find one it is good to join a local support group.  I joined a Stroke Recovery group I still belong to that group and with those friends and people I have met on this site it has had such a positive effect on my life that I doubt I would have survived as a caregiver as long as I did without them. I found blogging therapeutic too and still maintain a blog on here that is now about my life as a widow and former caregiver.

 

Sue.

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Hi again {{{{Ina}}}},

 

I took some of your quotes to respond to:

 

17 hours ago, Sephardicina said:

this was the first time in his life that he had been ill as such other than maybe a cold or flu he had a very hard time dealing with it.

 

 

On 8/11/2017 at 6:13 PM, Sephardicina said:

He gets frustrated that things are not happening quickly enough and I don't know how to convince him that he is making progress. Consequently, we get into arguments about it and I find myself wanting to run away because I feel I can't deal with it. I have done next to nothing for myself over this period of time even though I know I can leave him alone but I almost feel guilty if I do something for myself. I need help to get my self-esteem back in order to help him continue getting better.

 

 

17 hours ago, Sephardicina said:

I need to be able to go to our clubhouse to exercise and swim and relax for an hour or so but I think I have been so affected by this whole situation that I can't relax without being afraid that something else will happen.

 

 

For many of us stroke survivors (including me) a stroke is so unexpected and life-altering.  Makes us cranky, lol.  I was 34 when I had my strokes, first a severe hemorrhagic one on L side, neurosurgery, vasospasm causing an ischemic stroke on R side, so another neurosurgery.   I didn't have any physical deficits; I had expressive aphasia and numerous cognitive issues (still some residual).

 

Like your husband, I had no medical problems at all prior to strokes (still don't have HBP, high cholesterol, never been overweight, etc.)  We want everything back to "normal" without the long wait.  I know (from the caregivers I had) that this was very difficult for them to deal with.  As far as convincing your husband that he's making progress, many survivors or caregivers now keep a journey of each of the small steps made toward recovery, in order to keep them enthusiastic.

 

It's great to know he is becoming confident again.  He's very fortunate that you were a RN; you know how to determine if the physio and occupational therapists are very helpful.  (I've heard stories that some are great; whereas others are lacking!)

 

Ina, I really liked Kelli's mention of doing volunteer work again outside the home.  (Definitely helped me!)  If the volunteer work was in a place such as a hospital or long term care facility, you could begin volunteering the same hours as he.  

 

When you notice that he's comfortable spending a couple of hours volunteering there, you could then feel free to cut back some of your hours to look after your own needs.  Your concerns for him could be put to rest because there would be staff that would be capable of assisting him, if necessary.  

 

This would give you the time for the exercise and relaxation you rightfully need.

 

On 8/12/2017 at 2:05 AM, Sephardicina said:

I also have PTSD from being a first responder at the 9/11 World Trade Center disaster as was my husband and many other volunteers.

 

I'm somewhat concerned that your husband's health crisis and your sudden role of caregiver to him may have added to your PTSD.  Please, dear lady, keep seeking a method of having some free time without worry!

 

You're in my thoughts; hope your situation improves.  All the best,

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Lin: I truly appreciate your thoughts and suggestions but I don't know that my husband is ready to do any volunteer work in a hospital or a nursing home as yet. He says he is but I am not sure of that and he also changes his mind on a moment's notice.  To begin with he is not capable of running around a hospital as he walks slowly with his cane and is still concerned about someone being in a hurry and knocking him over. If the hospital had a "desk job" for him it might work and when he is ready I can always find out. I volunteered at a local hospital in Brooklyn when I was in high school and spent 43 years working in a hospital during my career so I am truly not ready to go back to doing that even as a volunteer. I also feel that because our lives have changed we need to do some things separately and have some "breathing space". Prior to his stroke we never spent seven days a week, twenty four hours a day together and now for all intense and purposes that is what has happened unless I go to the store or for one hour two or three times a week he is with the occupational or physical therapist. Once September comes I will have my genealogy meetings and that will give us two or three hours each to ourselves. You are also right in that my PTSD has been affected by my role as my husband's caregiver and I am taking an anti-anxiety medication as he is and it sometimes helps and other times I feel that it does not. I will try and keep you appraised of what is happening and I truly appreciate knowing that there is someone there who understands. I worked in surgery my whole career and when someone has a stroke they and the caregiver are never truly given all the information on what to expect. Also, working as an RN was different than taking care of a family member. When I was working I went home at the end of my day. Now, there is no end to the day.

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Ina,

Nice to meet you I'm another survivor rather than caregiver. If he's not super mobile yet the local hospital may be too much for him but what about volunteering as a visitor in a nursing home.  Nursing homes are used to people who move slowly and there are plenty of people there who'd appreciate someone to chat to regularly. It may also help him to get out and about knowing he is helping others. 

 

Ask him what he thinks/wants to do. This has several benefits.  It puts him more in charge of his life and gives a feeling of self worth and control of your own destiny (something we tend to question when we can't do what we used to do).  If there's something he wants to do but can't actually do yet talk about what his therapy goals need to be to achieve what he wants.  Therapy goes quicker and better with a concrete goal (not just "I want to walk better", spell out where he wants to walk to and what conditions he wants to meet in that walk), It also makes it easier to see when you've met that goal and it's time for a new one.

 

You should also look into respite care for him so that you can take some time for yourself too, you can't do this alone and should not be trying too.  Can you get another family member to sit with him regularly so that you feel comfortable going out for your exercise or whatever.  It may also be good to get him setup with an alert button system so that he can stay home alone without you stressing about it.  That would of course also depend on his real independence level. One of the worst parts for me was that loss of independence and the trouble convincing others that I was not a baby or an idiot and I should be allowed to try to look after myself.   Yes I stuffed up occasionally, but I learned from that what I could and couldn't do yet, and it didn't kill me it helped to keep me sane.  The only way to improve is to stretch your limits. 

 

 

My advice for all caregivers is step back a bit if at all possible, let your strokee try everything, you should only give help/assistance when they ask for it. Let them be stubborn, don't turn them into a baby.  OK we might be a toddler but you hold a toddlers hand to keep them safe, you don't do everything for them.  Yes balance this principle against your strokee's actual deficits and needs, but remember they were an independent adult before this thing kicked them, and mentally they still are (most of the time).

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Thank you for your advice but my husband is not the type of person to spend time in a nursing home visiting patients-it would be too depressing for him and that is not good. I try my best to not hover over him also and let him become more independent as time goes on. The biggest problems we are dealing with is that it is very hot here in Florida now so neither one of us wants to be outside for any period of time and we only seem to go out if we have an appointment-therapy or doctor's appointment or if we go to friends or to a restaurant. I believe I also indicated that we had spent several years volunteering here in Florida for the Sheriff's Department and we also volunteered in NJ as EMT's for thirty years while working fulltime jobs. I think that we are both a little tired of volunteering at this point in our lives.

 

As far as respite care, I know he can do things here at home by himself and I always have my cell phone and am never more than ten minutes away. We do not have any family to stay with him either and he feels that he can get around the house without anyone. The therapists are working with him on his goals of getting better and stronger as time goes on. One of the problems that we had was that the therapy place we were sent after he came home was not the right one-they had never dealt with stroke patients and the more I fought with the owner of the primary care practice that we go to the more I heard "this is where we refer patients" sort of a one size fits all. Nine months were wasted until I changed the insurance in January and got him to the therapy group that is now helping him.

 

By the way, we both like your motto and will keep it in mind.

 

 

 

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Ina, I always looked on respite as any time I spent away from the caregiving role so it does not have to be away from where he is now, rather it needs to be you taking time out from being either at his side or doing something involving him.  In other words it needs to be something that is entirely "ME time".  I used to go for a walk when the shower nurse arrived, go out shopping and stop for coffee when we had in-home care.  Mine was a concentrated 24/7 care scenario but even so I managed to take some time out for me.  I became a Chat Host on here for the same reason.  I would settle Ray with watching a movie or even taking a nap then take the time on the computer chatting to other caregivers as "ME time". And I made some good friends that way.

 

There is never a one size fits all solution to anything and you will find your own way.  Just make sure you yourself do not get overtired in looking after your husband. It is hard sometimes to remember that you are a person in your own right when you are a caregiver but it is good to maintain your own interests as much as you can to keep your own life on track.  I really miss my husband still , we had 44 years together, some of them not good years but nevertheless we were a couple who were very fond of each other and good together and that is what I miss so much now.

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Sue: Thank you for your advice. I guess my biggest problem is that I have not left my profession as an RN behind even though I retired nine years ago. When John was well we were both so very busy that I never gave thought to this ever happening and so we went about our daily lives and it was something that happened to someone else. I do take some time for myself now by working on my genealogy at the computer and sometimes sitting and reading or making a phone call. John will work on the computer or read and can go to the bathroom by himself and go into the kitchen to take a bottle of water out of the refrigerator. I guess we are not used to spending seven days a week, 24 hours a day together and even though we truly love and care about each other it can get to be too much togetherness. We will be married 48 years this Wednesday and have been together 54 years since our first date in 1963. I guess we are learning to adjust our lives. The psychologist that saw John when he was in rehab after his stroke described the situation at the "New Normal" and I guess that is what it is. The problem is that my husband has always been active and independent and is not used to depending on anyone else to get anything for him or to drive him somewhere and he gets easily frustrated. His "new personality" also is foreign to both of us and that makes things difficult for both of us. I guess that the bottom line is that no one told us what to expect as far as the changes in our lives and that is why I think we are now both grateful to have found this group and I thank you and everyone else for all the input.

Ina.

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On 8/12/2017 at 5:44 PM, Sephardicina said:

By March of 2016 he began getting better and had started to use a cane to walk and he wanted to go out. He was also again volunteering for the Sheriff's Department as a volunteer dispatcher which could be done from home. In April, 2016, on our way out he lost his balance when I had my back turned and fell. It took sometime to get him back to himself again. I am involved in Jewish Genealogy and I have gotten my husband also involved in it and working on a big project for someone I know in Princeton, NJ. We do go out more now and the occupational and physical therapists he is now seeing have helped him to rebuild his confidence.

 

On 8/13/2017 at 5:40 PM, Sephardicina said:

Prior to his stroke we never spent seven days a week, twenty four hours a day together and now for all intense and purposes that is what has happened

 

 

56 minutes ago, Sephardicina said:

I do take some time for myself now by working on my genealogy at the computer and sometimes sitting and reading or making a phone call. John will work on the computer or read and can go to the bathroom by himself and go into the kitchen to take a bottle of water out of the refrigerator. I guess we are not used to spending seven days a week, 24 hours a day together and even though we truly love and care about each other it can get to be too much togetherness.

 

Hi again, Ina :hi:

I've just read the most recent posts and you're getting excellent advice, and I hope it continues to help you.  

 

I do wonder why you feel your husband needs 24/7 care at this point.  He had a fall over a year ago, but recovered well.  He can walk around, get beverages to keep him hydrated in the heat, as well as using his computer, reading, etc., as time fillers.  

 

He has limitations, of course, but if he knows his limitations, why don't you feel comfortable about being out on your own when possible.  When you drive him home after an appointment with a doctor or therapist, is there any reason why it would be necessary to remain at home?   As Heather mentioned, you could get him a medical alert button.  

 

On 8/12/2017 at 5:44 PM, Sephardicina said:

I need to be able to go to our clubhouse to exercise and swim and relax for an hour or so but I think I have been so affected by this whole situation that I can't relax without being afraid that something else will happen.

 

Just give it a try, Ina.  It may be slightly worrisome the first couple of times, but you'll become accustomed to knowing he'll do fine.  I think it may help both of you to become more independent.  The time you spend together will be more enjoyable, and you both deserve that.  He may be noticing that you feel that you've lost your freedom, which could affect his confidence.

 

You'll both do fine, Ina, try some breathing and muscle relaxation exercises....they can help a great deal to alleviate stress.  Also, Sue's suggestion that you join a Stroke Caregiver Support group (and perhaps have your husband join a Stroke Support group and/or this StrokeNet site if he wishes) would also be beneficial.

 

Take care, :hug:  We're here for you!

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Linnie: Thank you for your help. I really just typed an answer and then realized I should have been on this page. You are right about my being able to leave John for awhile and go to the clubhouse after we get home from therapy but once I get him in the house and get him set up with whatever he wants to do we also have a cat who is 16 that I have to take care of. I think, that despite the fact that tomorrow will be 22 months that John had the stroke she is dealing with "separation anxiety" and she also wants my attention. I also find that friends who have a spouse that has a medical issue want my attention and advice and they forget that I have some issues of my own. John also is having a reaction to some of the medication he is taking and I have to get that straightened out. Our primary care doctor doubled his blood pressure medication and it apparently has brought it down too low. Consequently, when he walks outside and it is very hot he ends up out of breath and needs to sit down in the wheelchair before getting to the car. The same is true when we get home. So, as you can see, it is almost impossible for me to take any unplanned time to do anything that I might want to spontaneously want to do. Tomorrow is also our 48th anniversary and before this stroke we probably would either have planned a vacation or just gotten in the car and driven to wherever we would have ended up and it would have been fun. Instead, I need to try and work on getting John's meds straightened out. In August 2015 I was in the hospital for four days with congestive heart failure I didn't know I had-came from stress and I am on meds and doing okay. Two months later John had the stroke and for our anniversary in August, 2016 we did end up going out to dinner with friends who are on a cruise celebrating their 50th anniversary this year. This year that we were hoping to be able to really celebrate we are dealing with therapy and medication issues. Maybe we will get that vacation for my birthday in October.

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Ina, I just saw this topic tonight, and now I don't know where to start. There's so much here to think about.

First, Welcome to Strokenet! I think you'll like it here. We aren't doctors, or in any way medically affiliated. What we do have, caregivers and stroke survivors alike, is a lot of experiences. Chances are that any question you may have, there's someone here who has "been there, done that". Please try our caregiver's chat, as our caregivers are a wealth of knowledge, and will gladly try to help you with any concerns you may have.

I want to thank you, and commend you and your husband ,for being First Responders  at 911. I'm sure that what we saw at home on TV was a very watered- down version of what it was really like. I'm not surprised at all that you acquired PTSD from the experience. What I am surprised about is that given all that you have been through-911, congestive heart failure, your husband's stroke- and you're not on an anti-depressent. I know that you said that you have meds for anxiety, but they won't help depression, not like a med designed to treat depression would. It might be a good idea for you to be evaluated by a psychologist to determine, if, given the other meds you're taking, you're on the right med for you, and if you need a med for depression.

Both depressed people and stroke survivors can benefit greatly from exercise, so here's my idea: Do you have a YMCA near you? Can you call them and see if they have a hydrotherapy class for seniors, or water aerobics, anything like that? Usually, these classes are gentle enough that even handicapped people can keep up. While John is in his class, maybe there's one you can take, or another pool you can use. Do you know if there is a "Silver Sneakers", or similar, near you? I was thinking that if there's no one who can watch John, maybe you can pay someone to watch him for an hr or 2 every week while you go to your "class".

Can you pay someone to come  to your  home, and do some housekeeping chores, while you run errands, have "me" time, etc.?    Good luck, Becky

    

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Becky: Thank you very much for your suggestions and for letting me know what to expect from the group. I have never been one for chat groups but at some point I am sure we will both try it. We had a very bad experience with the stroke support group that we joined at our local hospital-just a bunch of people who wanted to do nothing but complain and not listen to what anyone had to say. There is an old saying "you hear me but do you listen to me"? That was what I was dealing with as well as John.

 

Now to get to your points. Yes, we both had a very difficult time at 9/11 and what people saw on TV in no way represented that real situation. I have also had CHF but that was determined to be stress related and it is under control. As a matter of fact it was two years ago and after we determined the problem and I was put on the right medication-have a wonderful cardiologist-everything has been under control. As far as John goes he is getting better now that I have gotten him to the right physical therapists/occupational therapists who are helping him but we are both angry about the time that was wasted with the wrong people and frankly I have made a complaint with the insurance company about what happened and I am waiting to hear from them.

 

Regarding my exercise we have a club house that has all the exercise equipment I could need and a heated pool but I just need to get myself to go over there. John does not need anyone to sit with him-he can go to the bathroom by himself and get a bottle of water by himself from the refrigerator and I usually leave him food if I am going to a genealogy meeting or sometimes he goes with me.. Today, August 16th is both our 48th wedding anniversary and 22 months since he had the stroke. We sat tonight and talked about what we want for the rest of our lives and it boils down to something very simple-we want John to physically get better so I can get emotionally better and have my life partner back. I know it is part of the syndrome but he changes his mind on a moments notice and I don't always know what to expect and I am getting frustrated. We are both depressed and the doctor has given us anti-depressant medication but that did not work when John was in rehab and I don't expect it to work now. The anti-anxiety medication works  well enough at night for both of us to sleep.

 

Thank you for your advice but the one thing about my husband that I have learned over 48 years is that in the long run he has to decide when he is ready to do something and that is when he will do it. That is what happened after he came home from rehab and it took six weeks and he decided he had had enough of the wheelchair in the house and began walking in the house and that is what will happen when we go out and he finally decides he no longer wants or needs to wheel chair to get half way to the car or anywhere that we have gone. We need to also get his medication changes because his blood pressure, I believe, was brought down too low and the medication he is taking for Atrial fib is also causing a problem and we will hopefully get these issues resolved on Tuesday when he has an appointment with the cardiologist. Maybe if he starts walking without being out of breath because of the heat and he begins to believe he can get around he will be more inclined to do more. The physical therapist is working on that.

 

Ina

 

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Hi again,  

 

I'm very glad that Becky addressed your depression.  Please understand that I don't wish to hurt you, I want to help you!

 

Ina, I hold tight to my positive attitude....never going to let it go!  After the first 18 months or so post-stroke, I had negative thoughts about my difficulty in trying to re-learn many everyday tasks, including speaking, reading, remaining focused, etc.  I finally realized that I couldn't improve until I made that negativity stop.  I still have difficulties, but they're much easier to deal with now because of my happiness and positive outlook on life.

 

My friend, I want to suggest you do the same.   I don't know much about meds (I just have a Px for asthma and allergies), but I never thought of it as time consuming.  I know many people who have HBP, and either purchase a blood pressure monitor or stop by a pharmacy on their way home to have it checked on a regular basis.  Their doctor can easily change the dosage if it's not maintaining their pressure at a safe level.  Try to relax, your husband's doctor will take care of this.  You can feel positive because of the fact that he survived the stroke.  Not everyone does!  Also, many survivors are more debilitated and unable to make the progress he has made so quickly.  Another positive!

 

You can also feel positive that your CHF is well managed by medication.  Feel positive that your friends find you helpful for advice, and they'd understand if you couldn't assist them at that very moment.  If it's serious, they can go to a medical clinic or a hospital.

 

Trust me, Ina, looking at everything from a different angle makes a dramatic difference.  It's very similar to the way we react when we lose someone we love....we mourn for a period of time, but come to a point where we know we were blessed to have known and loved these people.

 

You deserve happiness, but to achieve it requires positive thinking.  You mentioned the anti-depressant didn't work.  Did you ask your doctor to try a different medication?  I've seen posts on this site where members said they had to try different meds until they found one or a combo that worked, and they have to be on the med for some time prior to knowing if it is effective.   Also, you probably had counselling because of the PTSD; you may want to consider seeing a professional counsellor again. 

 

I hope I'm not coming on too strong; I sincerely want you to see the joy in life.  Here's to many years of happiness! :cheers:  Take care, my friend.

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As they say, "You can lead a horse to water, but you can't make him drink." Sounds like John in a nutshell when it comes to therapy. And, you know, that may be all right. Because I bet that there's one characteristic that most, if not all, stroke survivors have in common, and that is stubbornness.  Being stubborn may help us, it may hurt us , but you have to be stubborn in order for therapy to be of any benefit.  That's because therapy can be so very hard, that only those who refuse to give up are the ones who see any gains. I'm not saying that stubbornness is all that one needs, as there are lots of things needed, and no matter how stubborn you are, there are skills that will never come back. How do you know the difference? You don't. That's just it-you have to be stubborn, and not give up in order to find out. It sounds like John has stubbornness, and it may serve him well in this situation.

 

I really wish that while John is working on himself, you would work on you. You deserve it. Go to the clubhouse, after all, you all are paying for it, why not take advantage of it?  Maybe be re-evaluated by a psychologist to find out if you're on the best med for you. Best, Becky  

 

 

 

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I just took a vacation which was bedt therapy. I walked to a water fall when the wheelchair path ended....that was the motivation. Sightseeing was learning history, loving beauty, and loved ones together Being Doing Together.  

 

I want more vacations. I sat by a lake,on top of mountain on a road, and I used did became, and lived,lived,lived. If you can I reccommend the value of a vacation....

especially if you are busy tpe and need energizing relaxing time...interacting with other travelers is a joy, seeing beauty, eating mediterrainian food, sleeping on great bed pillows,or in moving car.....

 

I hope you can find fun, however nutty this sounds, but I think we cherish our time left,enjoy eachother, take what is next.

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Betsy:

Glad you enjoyed your vacation and I hope at some point that John and I will be able to do it but right now it does not seem possible. He believes that he is not strong enough to do many of the things we used to do-go to the beach, walk in a park, or even go the pool in our community and until he agrees I can no longer fight because I don't have the energy left. We have talked about vacations but each time we do and he agrees to something as soon as I make a reservation he has reason to cancel it. No-one told me that personalities change and that stroke patients change their minds on a moments notice.

 

I also know that Becky is right about my taking care of myself but I am so very tired at the end of the day after John has had his therapy and I have done things in the house that I used to have help with that I don't really have the energy to do anything for myself. I don't need the help of a psychologist to tell me what to do or a new anti-anxiety drug I already know. It is just very hard when you are so tired after 22 months. We go out with friends and it is nice but once we leave them either at their home or in a restaurant I am left on my own to deal. Everyone who wanted to know when John was in the hospital and in rehab if I needed anything (I never asked) has gone on to live their own lives and has no time to give us so I can have some time for myself. Of course, John can get around in the house fine-he goes to the bathroom and can go to the kitchen to get a bottle of water if he wants it but cannot prepare food for himself. If I go to a meeting I leave food for him either on his desk or on the table and that is where the dishes are when I get home. We had nine months wasted because we were sent to a physical therapy place where the occupational therapist never touched his hand or shoulder and when I finally exploded that nothing was being done the owner of the therapy place said they could no longer take care of him because the insurance would not pay for it. Of course, they gladly took the $35 per session co-pay twice a week. The occupational therapist he is seeing now has helped but has told us that he may never get the use of his right hand back again because the time was wasted.

 

I am sorry to complain but right now I am exceptionally tired and angry and probably not making much sense. I worked as a nurse in NY for forty three years and I guess I just expected more than they are able to provide here in Florida.

 

 

 

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Oh Ina, HUGS

You didn't ask at the time so the help evaporated as people decided they were not needed. It can be the hardest part of this, the way people you thought would stick drift off.  Maybe make a list of those people who offered then and make a deliberate effort to get them to do something now. Asking for help is SO HARD when you have been the helper for so long.  But most people will be happy to help particularly if asked to do something specific. Even if it's things you could do yourself, like pick up the groceries you've ordered.  You don't need to ask for long term commitments. You'll be surprised at how much pressure they can take off the situation if you are willing to let them.

 

It does sound like you are depressed. As I'm sure you know depression leads to exhaustion and exhaustion leads to depression. Have you explained to John how hard it is on you that he doesn't put the dishes away or at least into the sink when you are out. It is a tiny thing but it would help a great deal. I know sometimes those few extra steps are just beyond us, but does he know to "try" to pick up after himself before you get back?

How about getting a cleaner in for an hour or 2 a week? There's a lot to be said for outsourcing the tasks that get you down. Yes it's never done the way you would do it yourself but it's usually worth the compromise.

 

Yes you can't get those 9 months back. I had something very similar happen here so it's not just where you are. Only I lost nearly 3 years of gait therapy that would have made a huge difference if I'd know the right way to ask for it.  Boy was I p----d when I found out my health insurance pays for 150 outpatient PT/OT sessions per year if it's from the "right" hospital and ordered by the "right" specialist. But you can't change it to so you take a deep breath and move forward.  I've been using those sessions since I found this out and I've made great gains through them.

 

Having one arm/hand that is effectively useless is now normal for me. Tell John one handed living can be done and enjoyed. While I'd love more I'm not wasting energy on what can't be changed, and doing what can be done both in terms of recovering movement and doing things I enjoy differently.  That's part of the positive living stuff that Lin was trying to explain to you.  In many ways being happy is a choice. And while that bad therapy may have reduced the therapists expectations, what I do know is that there is no rule or expectation for stroke recovery that has not been broken by someone and while the early gains are the easiest to get there is no real limit/end to stroke recovery so long as you continue to work on it. The brain a miraculous thing but it needs guidance and regular prompting to make changes.

 

Hang in there and complaining is good until you define the problem you can't change it, just try not to let that mindset become your normal or it will take over your life. The trouble is it makes complete sense most of us have been in that head space.

Love and Hugs

-Heather

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Heather-your response is one of the few I can actually make some sense of. I know that depression leads to exhaustion and exhaustion leads to depression I have to try and find a different way to deal with it all. Unfortunately, I am too much of a perfectionist-maybe because of my medical background and training-and I expect that when I express and opinion someone will think about it and maybe realize that I am not just talking to hear myself talk. I have a serious problem with some of the medical community here in Florida that have the attitude that people should not be asking questions and it is okay to treat some people as if they are a bother. I was not trained that way.

As far as using one hand/arm I read your e-mail to John about that and he has said to tell you "thank you". Of course, we will continue to have the therapy as long as we possibly can and also work on it at home. John also finally decided tonight to look at a cruise out of Miami Beach. The cruise ship is handicapped accessible and even though it's destination is someplace we have been before I don't really care. We are planning on doing it for my birthday and even if we don't get off the ship I can sit and read and eat and use the facilities-especially the pool-and maybe not have a care in the world for three days. If it works out and John is stronger by that time we might be able to look at another, longer cruise next year.

Thank you for your help and encouragement.

Ina

 

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Another couple of aphorisms that are worth remembering

"don't sweat the small stuff"

"pick your battles"

 

i.e. save your energy for the things worth fighting for, and decide what really matters to you.

 

Personally I love the cruise ships, and they are perfect for a strokee's holiday other than that everything you want is always at the other end of the ship. you can end up walking miles. Take a decent sized tote bag everywhere. Staff are always happy to help with "odd" things like cutting up food for you or opening bottles (things that still defeat me out of home where I have more "tools").

I do recommend paying the extra for access to the thermal spa area that will be linked to the gym or beauty salon. It's quiet, warm and calm you get access to a disabled friendly hot tub that's not full of people, steam rooms etc. It won't help your tan and there's no bar but I don't want/miss either of those. A short cruise sounds like the perfect thing for you. Have fun.

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Heather-Until John had the stroke I always felt that many things that you describe as the "small stuff" was not important. It is probably still not important except that it just seems to add on to the big stuff and I try to deal with it. I don't argue either with people if I think I might lose-I am not a good loser and when I do argue I know the facts and know that I am right.

 

As far as the cruise-we are looking forward to it. We have been on ten cruises and know the drill. Of course, this will be different because of John's restrictions but we are hoping that with the physical therapy he is getting now his walking will well have improved by the end of October when we are planning to go to celebrate my birthday. John does not have any problem cutting his food for the most part and if there is a bottle that needs to be opened I can easily do that and as you said the cruise staff are always there to help.

 

Thank you for being so kind and understanding. I guess it takes someone who has really been "around the block" as they say to truly understand.

 

Ina

 

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