Stroke Caregiver


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I have not written for a while. Brian is doing well, but we are together 24/7 and it gets to us. We argue about dumb things. Plus he keeps bringing up sex which is the furthest thing from my mind right now. How can he even think about it? He has a heart condition as well and he cannot seem to understand that I have no interest in anything at this point. The days are so long, but he is doing better. No more wheelchair except for long trips. However, I get frustrated as does he. I hate that this happened and wish I had a magic wand to make it go away. I just feel so alone and isolated sometimes.

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I have no interest in anything at this point.

Hi Nancyeo,

 

I am glad you posted again. It is so good to hear Brian is doing so much better. Actually, it is a good sign that Brian is thinking about sex again. It means he is starting to feel better and stronger again. Mens' brains are hardwired to think of sex every 3 seconds. Beyond that he's starting to want normalcy to return and feel like your man again rather than a stroke patient. These are very good signs. Tell Brian that if his Cardiologist clears it, then you can discuss resuming sex.

 

It doesn't concern me much that you aren't interested in sex but it gave me pause when you said you aren't interested in anything. That is a classic sign of depression and if it continues, talking to your doc would be a good idea. Taking a day off alone or with a friend would help too and it is as important to take care of you as it is to take care of Brian.

 

I hate that this happened and wish I had a magic wand to make it go away.

 

Nancy, I know you feel that way--we all did--or do. But it did happen. Grieve, get angry, cry, punch a pillow---or scream your head off into one--but wishing won't make it go away. Do things that make now better. It can be better.

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Nancy, :big_grin:

 

Brian is improving! He is starting to feel like a real person again same as I did after about one year. My wife pushed me around in the chair, loaded/unloaded it in the SUV going to doctor appointments. She quit her job to care for me after 5 months in the hospital and rehab. I just couldn't walk, I could transfer from hospital bed to wheelchair or wheelchair to car seat and back to the chair.

 

If you felt like she did then you got no desire for sex or hugging/kissing. You feel more like a nurse and he is the patient. NOW, there is a time when that ALL changes as it did with us. I don't know where you are in this recovery process but evidently he is ready for sex and loving you, the wife, not a nurse or care giver!

 

He may not be ready physically but he FEELS he is ready for love. I had to go back to the VA for pills to keep an erection enough to have sex. The biggest change is with you being ready for this part of your married life again after so long.

 

While it's the farthest thing from your mind it is the first thing in HIS mind now and that is perfectly normal for a male survivor of a stroke who has recovered to a point. He feels better about life, himself and you as his wife and soul mate. He does not want anyone else. Now you have to consider his feelings and start to gather your feelings for him as your husband not the patient you care for at home.

 

Women can lose their libido and desire for sex as I learned watching the doctors TV show recently. That's true, my wife did too! What I'm saying as a member having gone through this chapter in my recovery life is try to understand he situation, it's not going to kill you but bring back what you had all the time! You say you feel so isolated and alone wanting a magic wand to make this go away. Well, your magic wand is let your mind tell you this is your husband wanting to be intimate with you, his wife. You already had great advise about going to YOUR doctor and a day or two off to reconvene your life with Brian.

Fred!

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hi Nancy, that means that Brian is starting to improve if Brian is starting to ask you for sex that is a very good sign Brian is starting to get back to normal and his old self. Just to be on the safe side and if you want to have sex to check with your doctor to make sure that Brian has a good enough heart to start having sex and yes red riot is right about wanting to have sex with you all the time men are like that.

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Thank you Fred for your honesty and insight into this delicate and private issue. I personally could not go there, but am so thankful that Nancy has a someone who is willing to address the intimate issues.

 

Nancy, I am so happy Brian is improving. 24/7 is tough. You need to find an outlet somehow, honey. I was able to do it by working part time and my pay check covers the caregivers. This is a consideration. Another is to ask friends and family to spell you off a bit. Even if one day a month to get your hair done, go for a walk or a cup of coffee. Take your breaks during the day-5 minutes outside or in another room with a cup of tea, a walk around the block. Consider day trips: library, grocery store. Bruce does well looking at the new book arrivals while I sit and read a newspaper and also he is happy looking over the magazine rack while I shop. You might want to try an hour or so day care or library, historical society event. I can also set Bruce up with a movie and clean my upstairs, or do my lady stuff, long bath.

 

The one thing I would like you to consider is a program, one day a week, maybe at the YMCA or a local Rehab, where you can drop him for a few hours of maybe swim, exercise with safe supervision and other dropping him off and picking him up, you are off duty for a few hours. Or an in home CNA for a day. Just juggle the numbers, consider the cost and see if you can't somehow build it in. Leo, Jen and Cathy cost me $15.00 an hour. Leo and Cathy do four hours at a time. They cook dinner, get him cleaned up for bed and do some light housework. Jen takes him on a "jaunt" and swimming-five hours. For $60.00 a week, you could do a movie, plan hairdresser, a massage or just take a bath, read a book, go for a walk and get a nice, quiet nap, chat on the phone, do volunteer work or a support group-just to interact with the outside world. Please know I am thinking and praying for you and Brian. I am so happy he is making progress. Time now to think of next step. Best, Debbie

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This is such an interesting subject. We are a year post-stroke now, but the process began very early on. While still in the hospital with tubes going everywhere at this point, a friend told me the most important thing in my learning process as caregiver. She is not a nurse or a doctor. I don't know how she got so smart. Her words were, "Let him be the man." I have thanked her many times for those words of wisdom. While going through inpatient rehab, I would lay next to him in his bed in the evenings while we watched TV together. Human contact is so important. After coming home, when I would have crying meltdowns at least once a week, he would let me crawl into his lap, and he would stroke my hair and comfort me. As his brain and memory started working together again, I would consult him on the things that used to be his decisions to make. We spend a lot of time together but certainly not 24/7. I'm sure either extreme would not be a good thing. Luckily, I do most of my job in my home office, so I have that outlet. I know getting help is sometimes easier said than done. Looking back, I know those earlier months would have been easier if I had given in to hiring help but just didn't think it would fit into the budget. Although we had a long list of people who offered their help with transportation to and from therapies, after a while everyone goes back to their life, and you are left to deal with life. Whew, where did that come from? I kind of got off subject there.

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  • 2 weeks later...

I just sometimes don't know how I will get thru this or if I will. We argue about stupid things, then he worries that I am going to leave him. Sometimes he says things that I think, where did that come from? I know this will get better but my big question is, can I hold on until then? I worry about money and him and everything else. He feels that he is useless now, which is not true. I am glad to have him there but I get so tired of it all.....I do cry alot and that bothers him, he thinks I need to take a pill to make me better.....I need more than that....sometimes I just feel so alone and have no one to talk to ...which is not totally true....but no one really understands what I am going thru except all of you. I just don't know how to get thru another day sometimes....we took a ride on Saturday to see my fathers grave, as he just passed away on 4/24 at the age of 96- I really miss him though he did drive me nuts at times but he did not do it intentionally, his nature was to do things his way and that was it....when he passed away, he left me a mess to deal with, which he knew he was doing but would never ask anyone for help...kind of sounds like me...I just need to know how I can get thru this....I know it is one day at a time....but I want the days to fast forward to spring....and hopefully things will have improved drastically-

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I just sometimes don't know how I will get thru this or if I will. We argue about stupid things, then he worries that I am going to leave him. Sometimes he says things that I think, where did that come from? I know this will get better but my big question is, can I hold on until then? I worry about money and him and everything else. He feels that he is useless now, which is not true. I am glad to have him there but I get so tired of it all.....I do cry alot and that bothers him, he thinks I need to take a pill to make me better.....I need more than that....sometimes I just feel so alone and have no one to talk to ...which is not totally true....but no one really understands what I am going thru except all of you. I just don't know how to get thru another day sometimes....we took a ride on Saturday to see my fathers grave, as he just passed away on 4/24 at the age of 96- I really miss him though he did drive me nuts at times but he did not do it intentionally, his nature was to do things his way and that was it....when he passed away, he left me a mess to deal with, which he knew he was doing but would never ask anyone for help...kind of sounds like me...I just need to know how I can get thru this....I know it is one day at a time....but I want the days to fast forward to spring....and hopefully things will have improved drastically-

Nancy, I am sorry for what you are going through. Maybe you do need a pill. See your doctor please. In the meantime you are not alone, we are here for you. Come and vent as often as you feel the need. Ask for help and take mini vacations away from it all. Take in a movie, get your hair done, go for a walk. Just take some time for yourself, maybe a long leisurely bath. All the best to you and I wish you happy holidays.

 

mc

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I have not written for a while. Brian is doing well, but we are together 24/7 and it gets to us. We argue about dumb things. Plus he keeps bringing up sex which is the furthest thing from my mind right now. How can he even think about it? He has a heart condition as well and he cannot seem to understand that I have no interest in anything at this point. The days are so long, but he is doing better. No more wheelchair except for long trips. However, I get frustrated as does he. I hate that this happened and wish I had a magic wand to make it go away. I just feel so alone and isolated sometimes.

At times I feel the same way you feel, when I am feeling that way I take a break from my friend and do some ME stuff, like getting my hair done or just sitting and watching TV and eating my favorite food. But I found that being totally honest about how I feel about a situtation is best. My friend had a strok in June and things have not been the same for us. He is not able to talk, his speech was affect by the stroke, the doctor's say in time it will come back, but right now it very difficult for both of us. He wants to have sex but I can't seem to bring my self to do it. so for now I am trying to enjoy him in ways that I can. Be encourge and know that things do change!

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Nancy: unfortunately nothing in stroke changes drastically, unless it is a downhill medical slide. Improvement and recovery are baby steps. That is also why blogging here or keeping a journal is important. One reads back two or three months and can honestly say, wow! there was an improvement or change there. It is only very recently that Bruce is finally controlling the TV volume. This after 2 1/2 years and a daily battle. Same with the incontinence. What once was every two hours is now just when he falls asleep-again almost 2 years for any real improvement.

 

I do agree with MarieClaire. Maybe it is time to consider an antidepressant for you. Get a good check up and discuss your issues with your Doctor.

 

An excellent piece of advice I received early on here, was do not argue with them. They can not keep up or follow the track. Learn to sidestep the arguments. If he says "white", you say well that it certainly one way of looking at it. Let me think that over and walk away. When I get crazy or angry, I state my feelings; simply and why I feel that way and then move on or give myself a time out. Usually it just takes me a few minutes to realize I am just angry at stroke and really Bruce has nothing to do with that. Example: every single night I must remind him to floss. Bruce has peridontal issues. His teeth have cost him a fortune and nothing made him more angry. He sees either dentist or peridontist every three months. So it is in his long term memory, certainly. But every single night I have to send him back to the BR to get his flossing done. Since it is difficult for him to maneuver the WC in this older house, one would also think that that would help with the memory. After good advice here and knowing Bruce is not acting out or being stubborn, I finally accept that he will probably never get that back. As angry as that makes me, it is not Bruce I am angry at.

 

Please slow down. Do not wish your time together away. Try to spend some quality time together every day and know I am thinking of you. Debbie

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Dear Nancy,

 

My husband is 62 and has had 4 strokes, beginning at age 55. We had only been married 2 years when he had his first major stroke - we were still in the honeymoon phase of our marriage - so you can imagine the libido was working overtime. Bill had severe athrosclerosis even at that time, as well as diabetes and heart disease so we had already gone through the ED issue so that hasn't been anything new. The fact that the only thing that would help ED now would be an implant is something new - and just not a good option.

 

For now, I really would encourage you to hug him, hold his hand, kiss him...let him know you are his wife - not just the caregiver. You need to do that for you as well as him. Even if you don't feel like it, do it and soon you will feel it. You have also been traumatized and it will take some time for you to regain your desire.

 

Antidepressants are sort of a double edged sword because they sort of whack the libido out of you. In the larger scheme of things, I think at this point if you spoke with your doctor honestly, describing how you feel she/he would probably suggest starting you on an anti-depressant. This is not at all unusual for us caregivers. We are suddenly thrust into a role we didn't ask for and probably don't feel prepared for. We are totally exhausted most of the time since there aren't enough hours in the day to accomplish all we feel we need to do and it is hard to see the light at the end of the tunnel when the tunnel keeps curving. I didn't cry - not much of a crier - and I thought that would signal depression. When I went to the doctor and told him I didn't want to get out of bed, I felt completely disinterested in everything in life, I never had time for myself and didn't know how long I was going to be able to hold on he told me I was displaying pretty classic signs of depression. I had been warned and had ignored the warnings..I have felt 100% better since finally giving in to medication. There are so many choices now, and if one doesn't work (by that I mean if you have unpleasant side affects) another probably will - and you won't feel drugged.

 

You have to get out...I didn't for four years and 24/7 is just too much. At first Bill was resentful of my leaving but he got used to it. (If you only knew you would almost laugh at this advice coming from me!) Call your local hospital to find out if they have a caregiver's support group. Call your local Agency on Aging to see if they know of any support groups you could join. We have an agency here called the Adult Center for Enrichment that offers not only a support group but adult daycare opportunities. Is there a Stroke Support Group your husband could become involved with? How about volunteering at the hospital on the stroke ward, is he able to visit other recent stroke survivors. The day after Bill had his stroke a survivor came in and talked to us. He was soooo helpful to me.

 

Do take care of yourself - as they say, in case of an airplane emergency parents are told to put on their oxygen masks first so they CAN take care of their children. This is the same thing. If you don't take care of yourself you won't make it - that may sound dramatic, but I believe it is the truth.

 

Warmly,

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Nancy, Wow! Brian had a stroke, and your Father passed-both in a relatively short period of time? Both events are life-altering, but to have both happen at about the same time is mind-boggling. But, somehow, you got thru it. You must be a strong person. And, you're still doing it, I mean by "it" that you are still coping with losing the Brian that was, and your Father? Not many of us could do that. I think that you are a much more capable person than you think that you are. I'm serious. And, I also think that you already know how to go from day to day. In fact, Ithink that you could teach us a thing or 2 about how to do that. Why don't you do that? Write down what you've done that works, and thinga you've tried that didn't work, and share it with us, if you want, or, keep it to yourself, for yourself. Becky

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Hi,

 

Just a few suggestions that have worked for us. Try watching video's, you know the kind they keep in the little back room of the rental store or if you live in a small town or what not you can get them on the net. Also you can take a hint from Mr. Disney and create your own Fantasy Land to try and spice things up. But for goodness sake, DON'T FAKE IT! That will do neither of you any good. I am also in favor of you seeing a professional. I don't know if you are aware of the fact that they do make a female version of Viagra. As a guy I can't speak from personal experiance if it works but I have heard it is very effective. Just my 2 cents.

 

Chris

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