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Stroke Caregiver - female
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About Sephardicina

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  • Birthday 10/26/1945

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  1. Heather-I just read your e-mail to John and he agreed that you are absolutely right. Of course, in 48 years of marriage I have heard that numerous times and he still does what he wants. I can only hope that he has gotten smart enough this time to listen. John holds a masters degree in psychology from Temple University in Philadelphia and is definitely no dummy except when he wants to deny what a situation is. I will keep working on him to slow down. Have a good Sunday and hope you are doing well. Ina
  2. Heather: Thank you for being there. I am beginning to feel that I know you and that you truly understand how I feel. Also, I didn't know your mom's name is Ina-I am honored to be considered by you as important. The small stuff again usually never bothered me and I am trying very hard to "ignore it" if I can. Not always easy but I am trying and just saying it is what it is and move on. I will speak with John's therapist about tailoring his program to our trip. Thank you for the suggestion. Also, tonight we went out to dinner with my brother and sister-in-law and when we got home John decided to walk from our neighbor's front door to ours and he did well but walked so fast he was out of breath when he got in the house. He said he needed to prove to me that he could do it. I am sure it was that he needed to prove it to himself. His blood pressure medication needs to be changed and I will speak to the cardiologist on Tuesday and to the therapist on Thursday about his progress. Again thank you for being there. Ina
  3. 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
  4. 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
  5. 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.
  6. 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
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. I fully understand what you are dealing with and it is not easy. You are blaming yourself unnecessarily for your mother's second stroke but you could not be there with her all the time. It is also very hard for you to let her go to a SNF because you know that is something she does not want. When my husband had his stroke I checked out all the rehab facilities available and knew which was the best one for him-he had never had a medical problem until he had the stroke 22 months ago. I also made sure that the nurses knew that I would be there to help if necessary-I am a retired nurse so it worked. Be your mother's advocate and talk with the necessary people in the facility where she presently is and find out what the best places are for her to recover back to the point where she was prior to the second stroke. Check the place out and make sure you and your father and family are satisfied with it. At the same time try and take some time for yourself each day-do something that you enjoy even if it is only sitting in a corner and reading for awhile. You can't take care of your parents if you don't take care of yourself.
  14. 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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