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about 5 years ago
Missy said...

Hi Claire,

Tell me more about how you're feeling.  Are you having difficulty dealing with the fact that your husband has a health condition that can be fatal?  Or are you having difficulty dealing with the fact that he's a different person because of the stroke? 

about 5 years ago
CA-Claire said...

Actually I am having difficulty with dealing with a 'different person' as well as dealing with the fact that happily ever after may be less than 6 years.  What I have more difficulty with right now, is the impaired judgement.  He has decided that he is going to go back to the eating and drinking behaviors that he had prior to the stroke.  He is unable to understand that this was a major contributor in the first place (overweight, little to no exercise, alcoholic levels of drinking), as well as the family pre-disposition to stroke - as well as the fact that he has had 2 strokes already and is extremely high risk because of all these things to have another, most likely fatal, stroke.

It leaves me with the proverbial bag - excess debt due to his impulse control, and the thought of being alone.  My religious beliefs help, as well as my church 'family'.  The caregiving for my husband and now for my parents - just recently moved near me (against their will) and the care that they need from me as well, is quite draining.

Thank you for the question

about 5 years ago
Wellspouse said...

Dear Claire:

Are you and your husband involved at all in a local area support group for stroke? And what about a group for yourself, as a spousal caregiver -- such as the Well Spouse Association (http://wellspouse.org[wellspouse.org]) . The problems with his behavior may not be totally solvable, and not by you...but outside assistance may help, that you could find out about from the local stroke support group. And it's important for you, the spousal caregiver to hear from and get support from other sc's... and to take regular breaks -- particularly because you are also caregiving for your parents -- a double load.

 

about 5 years ago
CA-Claire said...

Hi Wellspouse -

There is only one local stroke support group, and my husband goes to it by himself - needs to have some independence and some privacy. 

I have tried caregiving support groups, but in my area they are people dealing with parents or elders that live at a distance.  Having a spouse, and parents that are local, are quite a different situation.

I currently see a Psychologist at work, and a social worker through my Church.  It is quite possible that my husband's time may be growing short - he feels that he is 'home free' since we are almost at year 3.  Little does he know that this acutally means the sands of time are running through the hourglass more quickly.

Thank you for  your suggestions.  Will check out wellspouse.org.

about 5 years ago
CA-Claire said...

Additional complication has now been added.  Evidently my husband's mitral valve is not working properly, and has significantly degraded over the past two years.  The Cardiologist is talking heart surgery to repair the valve.  This is extremely scary to me, as my husband was not expected to survive the 7 week hospital stay from his stroke or to be able to walk without assistance and use his left arm/hand, much less live 3 years after the stroke.  I now know my limits - I am at them.

about 5 years ago
Wellspouse said...

Dear Claire:

That is scary news... You go along thinking, well I can manage this, and I can keep doing the other, having changed routines many times in helping your husband, and coping yourself with new symptoms... and then this comes along.

You can but take it a day at a time. And do find some time for yourself each day, whether it's for a walk, or a quiet time alone, or meditation. My suggestion of peer support also pertains. You are so right, I attended groups for my first wife, and they were good, but mainly were for her. I also went to a family caregiving group, but most of the others were children of aging parents, not spouses -- totally different outlook. Just as it's good for your husband to have his own stroke support group, it is good for you to have a spousal support group. As for social workers/therapists/counselors or religious people, you may be very lucky and find someone who is very understanding; but I too tried them, and I know if they haven't had personal experience of chronic illness/disability of a spouse, or even just within  their family, they are often at a loss to understand the "rolling grief" the well spouse feels as they watch their loved one and mate get sicker... Good luck!

over 4 years ago
CA-Claire said...

Well, it's been a while since I posted. Those of you that follow other threads on this site are aware that my husband passed away 5 days after his heart surgery. The heart surgery was successful, but his body activated a genetic blood disorder (lupus anticoag), and his body couldn't take care of the clots caused by this disorder. It's been 32 weeks and 1 day since I last heard his voice (he never regained complete consciousness after his surgery), and it is nearly 31 weeks since his Memorial Service. I am on such a dose of anti-depressants that I don't feel like myself. Difficulties at work and in every aspect of my life. Thanks you to those that have helped me.

about 4 years ago
LouiseinNJ said...

Claire, I am so sorry that you had such a short time with the man you loved. I hope that the love he inspired and that you shared continues to live in you, a burning ember even when the ashes make it difficult to see.May you find life-affirming comfort.

about 4 years ago
rk_smith said...

I am also caring for my husband after he had a massive stroke in 2003. You will never give up the fear of loosing him and at time's you will give up on him. The bond between the two of you will keep you strong until you yourself become so exhausted and worn that you can't even think straight. The very thought that anyone care's other than yourself is so overwhelming. You find that your in this all alone no matter what and if you seek help, then it will cost you a pretty penny. I myself have tried to get assistance but every time I have to go through a bunch of red tape just to qualify for the help. I find that "They" want you to wear yourself out to the point of self distruction so that "They" can come into your home and remove your loved one just so the state can take over and claim all of your properties. This is the only way you can get relief. Thats if your still in your right mind otherwise you will be in a facility along with yourloved one. More likely you will go broke and have to place your loved one within time and you will then be homeless and living on the streets unless you have a family member to take you in. I think we all know where we stand with that. We live in this world all alone and it's time we all realize that. Talk is cheat. Just beware of what you say about how you feel and who you talk to about it. No one said life would be fair.My heart goes out to you. keep strong for your own sake.

about 4 years ago
Missy said...

Hello there, rk_smith,

I want to preface this by saying I am not in the position of caring for a spouse who has had a stroke. So my advice may not be relevant. Though your post was heartbreaking and it sounds like you may sometimes have feelings of desperation. I couldn't help but to wonder if you've sought out connecting with others dealing with the same (other than on our site, of course). I did some quick research and found a site that lists stroke support groups by zip code. Here's a link[strokeassociation.org].

I hope it's helpful!

Missy

about 4 years ago
rk_smith said...

I find that dealing with others in my situation can be even more depressing because you find out how really hopeless and helpless you really are. but, Thanks for the reply and I will, out of respect check the link out that you so kindly sent to me.

about 4 years ago
LouiseinNJ said...

For what it's worth, I had a stroke (admittedly not a "massive" one) in 2007 at age 51. I was left with left side paralysis, hemiparesis, and an incurable pain condition called CPS. There is only one truth about post-stroke life: it is hard, very gradual and exhausting. But if he works at it, he will improve.

If he doesn't, he is stuck in aggravated angry complaining misery for the rest of his life.

A stroke patient's recovery is determined by the will of the patient him- or herself. You're exhausted but it's difficult to tell how disabled your husband is. It's also difficult to tell what HIS approach to recovery is.

There is now hope for actual brain healing. Our brains are much more plastic and able to regrow than we formerly thought. It is done through visualization and physical exercise.

Read Jill Bolte Taylor's "A Stroke of Insight." She had a massive brain hemorrhage that left her in a coma - but her attitude and determination helped her recover almost completely. Your own sense of helplessness and hopelessness is something you can overcome. Have you spoken to your own doctor? The constant stress of your present situation has probably given you severe depression. You might benefit greatly from anti-depressants for a while, to help you get the energy to change things.

Good luck and God be with you.

about 4 years ago
rk_smith said...

I am on anti-depressants but it doesn't help at all. My Doctor doesn't want to deal with how I feel. His concerns are the quality of care my husband gets from me. I wouldn't want to be in my husbands shoes but he has a much better chance of survival than I do because of the care and concern he gets from his Doctor and from me. there is nothing left for me but to exist. I am not feeling sorry for myself. I am only telling it like it is. I have grown bitter because of everyone turning their backs on us because they don't want to deal with it nor do they have to. I have not had a life since 2003 and I am a very social individual. I resent everything and everyone that doesn't have to deal with these issue's. I haven't had a good nights sleep in almost 7 years now. I am tired of everyone telling me what I have to do and how to do it because I have done it all already and I am totally burned out over it. I Just don't care anymore other than what I can do for my husband. There just isn't anything left to tell that I don't already know or haven't heard. The best advise I have heard of is that I transfer all assetts into my name and divorce my husband. That way he will get outside care and I can still be with him whenever and as often as I want. that way our assetts will be protected and as far as we woud be concerned, we would still be married in the eye's of God! Just something to ponder on for the time being.

about 4 years ago
LouiseinNJ said...

What does your husband say about all this?

And why don't you find yourself your OWN doctor?

But if you are sure that there is nothing left to tell you that you haven't already heard, and if you have resigned yourself to this fate, then there is no advice that I or anyone else can give you.

All I can do is include you in my prayers.

about 4 years ago
rk_smith said...

Thanks. Thats about all that is left. Some of us fall through the cracks. I am one of them. As for my husband, We have discussed all factors and he is 100% for it because it is the only way for both of us to survive.

about 4 years ago
Missy said...

Rk, I just want to be a cheerleader for you for a second. You're worth investing in both your mental and physical health. I know my husband wouldn't want to see me decline because of him. I'm not in your shoes, so I'll stop handing out advice now. But know I'm sending you hugs and prayers for some light in that tunnel.

about 4 years ago
mlaw said...

My husband had a TIA several years ago, with no apparent damage. However, recently he was diagnosed with A-Fib, but couldn't take Coumadin because of stomach bleeds on blood thinners. Meanwhile, he had severe headache and turned out to be a hemmorhagic (sp) R sided stroke and most of the time he seems fine...however, his dr said don't drive for several more weeks. We made plane reservations to attend grand daughters graduation and it was later suggested to us that he shouldn't fly. Called the dr...no flying. Still can't take coumadin and now has HIGH levels of protein in his blood and has to have a kidney biopsy, but still feels "fine". His neurologist said if he had been on Coumadin at time of stroke it would have been a disaster. We're now living with my daughter in her house, what we have left of our belongings in storage and I feel as though we're in limbo!

What to do next?

about 4 years ago
sammiee pitt said...

i pray foryou i have been suffering for a year since my stroke, frozen limbs andspasticity

about 4 years ago
sammiee pitt said...

the life you once had no longer exist, when i tell my friends i died when i had the stroke that person no longer exist

about 4 years ago

My husband had a massive stroke that took out his right ventricle completely just five weeks ago. The neurosurgeon said he was shocked my husband survived this kind of stroke as most do not. He is currently in a nursing home going thru rehab but the neursurgeon told me yesterday there is nothing that can be done and he will never get better. He can no longer stand at all, has lost his entire left side and field of vision. His conversation is mostly nonsensicle and he suffers from figeting, and focusing on things that are not real. Everyone has recommended I put him in a nursing home, but I am now visiting dementia care facilities that seem much nicer. All cost about the same amount. I feel guilty just looking into facilities as all he talks about is coming home and about being with me. I go to visit daily, but all day long he asks nurses constantly to "call my wife"--where is my wife? He simply wants me there all the time, I am his security blanket. He wants to come home yet I cannot care for him without lots of help. His inablilty to stand, makes transferring to his wheelchair, showers, toileting etc, impossible without help and a lift machine. In addition, at home he will not get the activities aimed at dementia patients. Still, my guilt is killing me. I miss my husband so much, the man I have spent nearly 30 years with, he was truly the smartest man I ever knew. He was a very successful corporate executive and was loved by everyone who knew him. He was not only smart, but engaging and charismatic, he was kind to all, including me and my sons who never heard him raise his voice or get angry at any of us. What do I do with the guilt and how do I make the decision of where he should go?

almost 4 years ago

Hi my name is rube I had was 56 yrs old. I was at the gym one day and I started having really bad migrain headaches, I was taken to emergency 4 times but they would allways send me home with pills. on the 5th time I didnt even have a chance to take the recent medication and I was rushed to the hospital yet again, my husband cried for someone to listen and they admitted me. they send out a biopsy of my brain ,however within one week I was a quad compleetly paralysed from the neck down I could not move anything, exept my head but my neck could not support it so it was held up by my husband, my son's, and a strap on my new friend the wheel chair. how can I tell you what to do as a caregiver to someone you love, but tired of all you have to do? You do have a lot to lose, but beleive me when I tell you that while you are humbling yourself for anouther , you are now being blessed as we speek.

Just know that there is only one creator and nothing goes by him without his knowledge.

There is surely a reason for your struggle,and for our paralysis.I was the one with the paralysis and no one but the person afflicted and God know our thoughts, our feelings. The need not to be a burden to you our loved one's.

I can tell you sincerly and as a beleiver in Christ Jesus exercise your God given faith. (1peter5:7) "casting all my cares on him who cares for me" He that created you knows all you are going through so go to him for everything and do not rely on your own strenght because you cannot do it on your own strenght. I can only tell you that you cannot give up, for do you not know, "that greater is he that is in me then ...he that is in this world" I know its a sacrifice that you do, but remember that the confession you make with your mouth has got to be a good confession not a negetive one ...everytime that you confess disease and weakness and failure in your life , unknowingly or knowingly you magnify the adversaryabove the father, and you destroy your own confidence in his word.

I know its hard but have faith that he is with you every step, just speak to him and give him all your problems. his shoulders can handle anything. if you need me just write me but still just know you are in my prayers.

almost 2 years ago
Louise Padilla said...

Dear Readers, My husband had a ishemix left side brain stroke two yrs. and four month ago. The doctors gave him no hope for survival ,but our Creator said differenly. Today he is walking , trying to put words together to form a sentance and sometimes does. Please never give up, keep praying and br postive. Its hard and very tireing but it will pay off I promise. God knows what HE is doing, we have to learn to trust HIM ,and yes it gets hard. I still believe one day my husband will regain his speech and also overcome the paralisis in his right hand and foot. Here are a few things that he couldnt do that he can do now.Get dressed,brush teeth, tells time , knows the time of his favorite shows, notices when I drive calelessly, lol, with jestures lets the chropractor know where he hurts. Cares for his bathroom hygyiene. Numerous other things. Please never give up there is always a better day. My best advice is to always prat, pray, talk to GOD HE listens. I have been through depression and it hurts. Life changes are never easy. I understand all of you. My facebook is Louise Graham Padilla . I would love to be everybodys friend. Our picture is our facebook profile. Im from Broken Arrow , okla. Hope to hear from all.

over 1 year ago
ElaineTK said...

Hi Louise, My husband had a hemmoragic stroke almost 7 years ago. His right side was paralized, he almost died. He couldnt talk , or speak, or eat. Today he is much better, however, life has been really difficult and I feel like after 23 years of marriage we are falling apart. I am a wornout caregiver, feeling all alone. We still love each other, but we have become distant. The power of God sent him back from dying, and we have lost much, but seen many miracles. It may be time for a marriage councelor, my son just suggested it. He says I know a lot about caregiveing, maybe it is time to concentrate on my marriage again. I think he is right. Elaine K

over 1 year ago
Wellspouse said...

Dear ElaineTK:

Please check out the Well Spouse® Association, http://wellspouse.org -- we offer support to spousal caregivers, and one of our mottoes is "You are not alone."

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