How to accept where our loved ones are when their lives have turned upside down with strokes.

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Recently my husband of 18 yrs. had a massive stroke after having a successful quad ripple heart bypass surgery on Nov. 20th, 2012. Four days later is when he had a massive stroke. This was also the day before he was to be discharged to go home from the heart surgery.
I was devastated, and here all of a sudden our whole world was turned upside down as many of you have gone through in your situations with your love ones.
He received 21 days of therapy, physical, occupational, and speech. Even though he could still talk, his swallowing ability had been affected on the left side since this was the side of the paralysis. After the 21 days of therapy, he was sent home in which home health was in place to come in the following day to do an assessment on if he would have pt or not and other services. There was a hospital bed delivered along with a lift and other items. Little did I know then that these would not make much of a difference.
As the days began at home, my eyes were opened to the shocking truth that I was not going to be able to get my husband out of bed without someone else helping me. So, for the next four weeks, I saw my husbands abilities decline from what I saw when he was at the rehab. I felt so darn helpless. I not only battled this part of the stroke, but the hallucinations also. This was and still is worse than the physical part of the stroke. Home health was not able to give me the help I needed to see him progress, and therefore he has regressed right back if not worse, than what he was before he began his therapy treatment in the hospital before he came home.
I could not take it anymore. I told the insurance company that he needed to go back into therapy, and that he deserved better than this. He was approved, and is now in a rehab unit in a local skilled nursing home facility.
Even though I and my husband are strong believers of God's healing power and is able to perform miracles, part of me cries in the fear of not ever having his mind back as it was before the stroke. I want my husband back...and am trying to hold it together. I am 24 yrs. younger, and we have been married 18 glorious yrs. He is my life, and am now not sure if he will come out better, or the same as he went in. If he doesn't get better, I don't know what I am going to do. All the sleepless nights, and around the clock care giving which I want to be able to do I realize I can't by myself. Even if I get Hospice, there is no one to help at night which is the hardest part because of the lack of sleep. Hospice did tell me they would try to work on this part to find what would be good to allow me and him to get the rest, but I don't want to see him decline and lay in that hospital bed day after day...I just can't do this.
His name is bill. and he loves kids, and we have a little farm which he loves to grow veg's. and plants of different types to give to people. We have blueberry bushes, and scuppernongs and all this is his passion and I want him to be able to enjoy his life again.... How do you get to a place of accepting? Do I have to? Can we keep hoping he will have a normal life again? I am angry that my husband's life has been taken in this way, and hope some of you will share how you got through similar situations and maybe some solutions of how to cope with such an overwhelming situation.
On top of all that, Medicair will only cover the first 5 days of copay's and then I am responsible. We are hoping Medicaid will hurry up and approve him, and even then I don't know how much they will actually cover. There is so much to find out about and seems like the timing is crucial.
So, there is my story. I have considered just as a last choice of a permanent stay in the nursing home, but just the thought of that scares the heck out of me. Only because I don't know what to expect as far as his care, and also financially what all is involved. More than likely, I am going to use Hospice, and pray he will either get where he can get out of bed by himself safely, and become somewhat mobile, or for the Lord to take him home if his health declines. He lost 35lbs. since dec.15th, and I was shocked when they weighed him at the rehab. the first day he was admitted.
I don't know what to expect y'all, and I don't want to see him suffer with bed sores and constipation like he's had so bad since he's been home also. I'm doing all that I am told to avoid these things, and hopefully when he comes home this time it will be better.
Thank you for letting me share, and want to get back to the place where I was one who lifted others up and prayed for them in what they were going through in their lives. I am tired of this life being about me and my husband's illness and want so much to move on. I pray it will be soon.


southernyankee, my heart goes out to you. I hope that some people here who have a spouse they are caring for answer soon. Weekends can be slow here sometimes. You sound like you have been doing all you can do. I wondered why hospice became involved. Is your husband not expected to live? or were they able to find a loophole to help? If they found a loophole, then God bless them. I know that you need help.

It sounds like one of the worst problems was that he was released too soon from rehab. This made you feel like you weren't doing a good job, because he was not at a point that you could take care of him. I imagine it had something to do with insurance. It seems like everything medical does nowadays.

The only option I can think of is to apply for Medicaid and look into a skilled nursing facility (SNF) that does rehabilitative work. A massive stroke takes time to recover and recovery may never be complete. If he is able to recover, I hope that the new abilities will be as enjoyable as the old ones. You are a sweetheart to love and care for him. I don't know what will happen, but a SNF sounds like a good choice for your husband. Please let us know what happens.
Thank you so much for your compassion JessieBelle and your thoughtful response. As far as Hospice, they are not strictly "end of life" services, although that is what they ultimately are designed to be. They said that individuals who are limited in such a way that they are unable to take care of themselves to certain degrees also qualify for services from them. i have a friend of mine whose dad has copd and does not get out of the house hardly at all and Hospice picked him up as a client. He has had them for about 2 yrs. now I think. also a nurse told me her gramma has hospice and has had them for quite a long time now also. So, if there are more benefits with Hospice than home health, then I'm willing to be open to that. The only thing is that they do not provide any type of pt or therapy to try to increase the mobility potential of the client, rather to keep them free from pain and as make them as comfortable as possible however long that may be.

I am glad to know if people have had similar experiences that they can share and we can be an encouragement to one another. I know this is not the best plan that God had for my husband, and I don't blame Him. I do love Him so much for it is Him who has kept me going thus far. I just miss the love of my life, and find myself crying more and getting it off of my chest while he is in this time of hopefully a successful rehab.
As far as SNF, it will come down to finances, and if I am willing to let all that we have worked so hard for to be taken. I about know the answer to that now, and if it means for however long I can keep him home, then that is what it will probably end up being.
He is my life, and if he and I can't be with each other and enjoy what life there is left together, than none of it is worth it. I would rather be the one taking care of him knowing he is being taken care of properly and being kept as comfortable as possible if he ends up being bed bound again. He has been the best thing that has ever happened to me, and I know he would do the same for me if the tables were turned.
If I was able to financially put care giving in someone elses hands as far as a SNF, and knew he would be well taken care of, that would be one thing. But other wise, it will not be an option. We own our own home, well, almost paid off home and have a nice little piece of property. I will not let the state or any institution take what does not belong to them if that was to be the course of action by the facility.
He was released too soon Jessiebelle, and insurance had everything to do with it unfortunately. My lack of strength to operate the lift, and the potential danger of one person maneuvering it made it impossible. I almost dropped him, but thank Jesus there was a chair under him and a neighbor down the road to help me get him back in the bed. She was a God send!!!
So, have you gone through this? If so, thanks for what you said. You may have gone through some other type of situations regarding caring for a loved one, and we all experience similar feelings. thanks again for your words of encouragement and look forward to others responses. southernyankee
It is almost as if you are telling the story of my mom and dad. We have been in the same situation for over a year now. My dad had a stroke last November and went into the hospital and then home. We were at our wits end at what to do. Then dad had a relapse and went into skilled nursing. But they also told us he had the later stages of alzheimers. It was almost as if the stroke weren't enough. That the addition of the alzheimers diagnosis was just cruel and unusual punishment. My mother has been in denial a long time. She still believes that my dad will return to his original state. She keeps reading and studying about things that could be wrong with him. I think the word "alzheimers" was just too much for her.
My parents are in their early 70's. They both retired so they could travel. Not going to happen. My mom has been so bitter. She doesn't blame my dad. Doesn't know who to blame. Thank God they have a new home with wide doors and tile and step in showers. It is a DAY BY DAY PROCESS COMING TO TERMS. We have home health care that comes five days a week. We have the same girl and have built a warm and caring relationship with Tomeka. She is kind, loving and a godsend. Also, hospice delivers meds to my parent's house. We have a wheelchair but no hospital bed. For the most part, my mom takes care of my dad. She wants him to sleep in his bed as long as possible. Daddy doesn't know who we are most of the time. He has moments of clarity but they are few and far between. My mom has myself and my brother and sister. One of us is there every day in the afternoon to help her. We take turns because we love our parents and want to help them get thru this. My mother (after much prodding from us) hired a lady who had experience sitting with people who had alzheimers. She comes two days a week for 8 hours a day while mom gets out and goes to a movie, grocery shopping. We demanded that she take time for herself. You can't stay day in and day out. You are no good to anyone if you do not take care of yourself first. We have made it over a year. IT is work but we know we can do it. Take care of yourself and ask for help. There are people available to help.
southernyankee, I found myself in your situation, after 46 years of marriage - he also was a heart patient, twice bypass surgery, the last surgery was to place a cardiac defibrillator, and 21 hours after I brought him home he suffered a massive stroke (right side) - his memory of our marriage was gone and never returned. Although he considered me "his friend, his nurse, or rescuer" depending who asked. He too had problems swallowing and everything had to be thickened. We went through rehab as in- and outpatient. He regained his mobility, his speech somewhat and then things went rapidly backwards. What he relearned, he forgot and he developed a fear of strangers, which left me as a sole caretaker 24/7. I don't think there is a word to describe how I felt - exhausted doesn't come close. But the worst part, as you feel right now, is not having your husband, although he is right there with you. Besides all the therapies I also stayed in close touch with his neurologist - he is really the one that can tell what exactly goes on in your husbands brain. In my case, due to of the location of his stroke and the size of the damage, he told me that not only will his memory not come back, but since he is now forgetting what he relearned, he was diagnosed with vascular dementia. I wish I could tell you things will be as they were, and maybe things will turn for the better for you again, but try to hang in there. I know it is heartbreaking, lonely, frustrating and seems at times so unfair that you want to tear your hair out or howl at the moon. I have done both - especially since I was more or less on my own to deal with everything. The loss of weight was in his case the same. So his Dr. put him on Megace to increase his appetite, which helped for while and he regained some of his weight. Everyday seemed to bring something new - sometimes even funny little things, that today make me smile. Keep in touch and let us know how you are holding up, if and how things change, or just to vent. And most important, as has been said before - take care of yourself and ask for help.
Thanks to you both, stacylee&marksburg. It has been a while since that last post, and I have been somewhat more at peace with it all. I know that bill will go and be with the Lord. Bed bound 99% of the time, and losing appetite little at a time, among other things, we still share each day as it it was our last together. I believe this is what we should do anyways with each other, or with anyone that the Lord has put in our lives. It's really not about us. It's about Him. Bill still knows who I am, and his memory doesn't seem to have been damaged as severely as others in his condition, although his short term recall is pretty well gone. He still sees things that aren't there a lot of the times, but the Lord has always given me ways to work with that. I believe his being in the bed has created more agitation and hallucinations than anything else, and thank God for medicines that ease that area for both him and me. Hospice has been in place since Feb. 16th, and they have been a blessing. I have since gotten started on a will so hopefully all will go smoothly enough when that day comes, and I know it is. I have dealt on a daily basis with this, all of the things that seem to go hand in hand from, how can one get ready for someone to go be with the Lord while they are still here to fixing meals in a puree form to just crying my eyes out with an an expected emptiness. Oh how I wish this was all just a bad dream sometimes. But it's not, and so that other part of me knows my beloved husband will no longer be trapped in this awful place that he's in and be finally free! For that I will rejoice.
I pray that you both will also find a peace somehow, and receive God's grace to get through each day as we continue to hold on to His special promises. One thing I have to say, is that instead of trying to take care of myself, it was time to let the only one who knows how to do that take care of me. He does alot better job of it than I do. To just listen and know He is there leading and guiding us brings such comfort. God Bless to both of you.

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