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Thea

My best friend is gone yet still here

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I am here because I need help coping with and learning to accept my husband's stroke.  My husband suffered an acute ischemic stroke 7 months ago.   Months previous to his stroke he presented with high cholesterol and a spike in blood pressure that went untreated by his PCP.  He now suffers with aphasia and apraxia.  He did regain his ability to walk but still has no feeling in his arm or leg.  It may be because I believe his stroke came with plenty of warning and could have been prevented (but wasn't through no fault of his own), but I am stuck somewhere between anger and depression all the time.  His stroke forced the closure of his business and me into early retirement.  I constantly mourn the easy conversation we used to have.  I am angry over this stroke destroying our life and changing the dynamics of our marriage from spousal to more parental.  I feel like I no longer love him like I did and this brings me extreme guilt, because none of this was his fault and he deserves better; better I just can't seem to provide.  He and our life together was everything to me for 20 years.  Now I resent I shoulder the burden of everything inside and outside of the house.  I no longer exist as a person, but just his caregiver.  I feel as if a lot of my anger and resentment would subside if I could just accept what happened, but since I believe it could have been prevented I just can't.  Any advice would be greatly appreciated.

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Thea,

Just know that everything you are feeling is real and must be dealt with.  You are a victim (or survivor) of your husbands stroke just as he is.  He didn't ask for it and neither did you.  Your whole world has been turned upside down.  Having said that, I must add one caution, and that is to deal with the anger and resentment the best you  can.  You can't have much effect on the stroke happening but you can have an effect on the anger and resentment.   And you will have to do that while carrying a very heavy load as a caregiver.  You do still exist as a person - a very valuable and important person.  You can do what is necessary.  It is evident by the way you have analyzed the situation.  The foregoing is not medical advice, it is the result of many many discussions between my caregiver wife and me.  I suspect the majority of the people on this site have felt or believed some if not all of the things you are experiencing.  Don't be afraid to vent to us - we've been there.

Take care of yourself so you can take care of the other one.

James

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The, I am a survivor rather than a caregiver but I understand perfectly what you mean. As James said both parties are affected by the stroke and it is difficult to decide who has the  worst deal. I am very well aware of the tremendous changes it can have on a marriage and to try and compensate I insist my wife continue with her own personal social life like Red Hats, scrabble and rummiklub engagements. I baulked out of accompanying her to quiz evenings since I was no good at them anyhow, she still attends but is allowed to carry her mobile phone in case she  is needed.

Now I know this letter is of no value to you but if it conveys to you the deep sympathy we feel for your problem then it may help.

Deigh

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Thank you for your kind replies.  I want to stress my husband proper or providing his care have nothing to do with my anger and resentment; rather, these emotions stem from what appears to be careless medical treatment by his PCP.  My husband had no self-imposed risk factors for stroke.  He was active, didn't smoke or drink and was at an appropriate weight.  The only issue he had was high cholesterol that went from 201 to 241 in a year.  He was never put on a statin.  When PCP noticed an acute spike in his blood pressure at a routine office visit, they ordered daily home monitoring and required him to send readings via their portal.  He bought a cuff and began using it within 12 hours.  He sent weeks of daily readings that were ALL in the stage 1 and 2 hypertensive ranges according to AHA guidelines.  When the PCP finally did put him on meds, none of the SIX she tried controlled his BP.  Husband began to feel ill and was told in a written portal message his readings "...look great!  Stay the course!"  Rather than refer him to a specialist, PCP RE-prescribed one of the medications that didn't work the first time!  As husband was just finishing up the last details of his deceased parent's care, and a sweet guy whose specialty was never self-advocacy, I was determined to work on resolving this when we returned home, but never got the chance.  His stroke occurred thousands of miles from our home, requiring us to be medevac'd back (to the tune of well over 30k).  My husband went to long-term acute care where he remained for three months.  I returned home and all his PCP said to me when I told them about his stroke was, "Oh buck-ets".  Yes, oh buck-ets indeed.  Which brings us to today.  As I retired early my pension will be reduced over my lifetime by about 150k.  My husband struggles to tell me what he wants for lunch.  Each day my heart breaks for him a thousand times.  The retirement we both worked so hard for has been ripped from under us.  Thus my feelings of anger and resentment.  This was just one of the many strokes that didn't have to happen, if only the PCP acted responsibly by making an appropriate referral.  I learned a funny thing about "standard of care", though.  SUBstandard counts too, no matter how a life or two gets ruined.

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Thea,

You are right and I did misunderstand the reason for your anger and resentment.  It must be very hard to handle the idea that your husband's stroke could have been avoided.  Unfortunately doctors are not infallible.  "Oh buckets" indeed.!!!  

I'm afraid I'm not qualified to deal with the anger and resentment you are feeling toward that PCP.  

Speech therapy is something I had to deal with.  I got my best results by singing (by myself and where I couldn't be heard by others).  Pick a song he is already familiar with and let the repetition begin.   So sorry you and your husband are having to fight this battle and I wish you both the best.

James

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Thea, You might be totally justified in feeling the way that you do, but the anger will not help the situation, and not help you or your husband. Sounds like you know this, but it bears repeating. My first suggestion is for you to get an antidepressant from your doctor. It will help you deal with the depression that you're feeling.  Also, see a therapist or counselor who can help you to deal with the anger. You've got a lot on your plate right now, and an antidepressant  and therapist can help you navigate these new waters.Best of luck, and good wishes, Becky 

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Thea I am Sue, former Caregiver to Ray, Ray died seven years ago but I stayed on here as a volunteer as I am Blog Moderator. Part of my experience was similar to yours. Ray had had one stroke in 1990 and returned to work after six months rehabilitation. In 1999 he had two major strokes four weeks apart and we both retired, me to look after him. He was in hospital for four and a half months and came home into my care.To shortened the story he had another seven strokes over a 13 year period, the last put him into a nursing facility as it took three people to move him, I could no longer manage him alone. He died 13 months later.

 

I had all the emotions you are feeling, anger at the doctors who couldn't get the medications right, couldn't tell me why he had so many strokes. Anger at the hospital medicos who didn't know how to help him, just left him lying around under observation etc. It took me a few years to realise I had to stop worrying about what had happened or what might happen and just take life one day at a time. In the end when he was really sick, incontinent etc I had a routine, each day I put my feet ion the floor and said: " Today I choose to look after Ray."

 

You are not far into your journey yet and I understand your anger and frustration. It is normal. I can see myself in you. All I can do is encourage you to join in Chat (I hosted a Caregiver Chat for many years) maybe start a Blog as an online journal, read back on some of the Caregiver Forum posts and take every opportunity to learn more about strokes and the way people deal with them. There is a lot of expertise here from Stroke Survivors and Caregivers. Hopefully you will find people you can relate to. I certainly did.

 

Remember you are just feeling your way forward. Like all of us here you didn't expect to be in this position but by the sound of this you are a strong person and little by little you will learn to cope. If you were here I couldn't give you a hug  because of Covid-19 but we could sit down together and discuss this over coffee. I wish you well in your new life. It is hard but looking back in a few years time you will see how far you have come.  (((hugs))).

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Sue, thank you so much for reaching out.  Your doing so is an emotional life saver.  One of my major frustrations has been that is little to no instruction or support for caregivers.  It's more like "He's discharged, here he is, take him home now".  I found I was actively inserting myself into my husband's daily care and therapies for months, just to get any scraps of a clue I could.  Each acute care facility should have a volunteer stroke caregiver mentorship program, to match experienced caregivers like you to clueless newbies like me.  I am surprised something so simple and cheap to put in place isn't.  Part of what causes me stress is feeling like I am failing in procedural parts of the process, even simple things like the meds box getting away from me and running empty.  In and of itself, not a big deal but in addition to the other pots on the stove boiling over...I know you get it.  So many hats, not enough time.  Feeling guilt for tending to myself or the selfishness I feel for engaging in a hobby that really helps my mental health.

 

As for what you say about the meds...and it's true, doctors are not infallable but geeze louise.  Even a secretary like me knew the dangers of the "high cholesterol high blood pressure combo".  It's a public service announcement a minute, so to speak.  For a doctor, it's got to be pretty much doctor 101 information but somehow, I was the only one who thought it was a big deal.  It was the subject of several arguments between my husband and me PRIOR to his stroke, my telling him his health was in danger, and him replying, "Well, you're the only one saying this, the dr says it's fine."  And now here we are.  You also clearly understand without my ever having said so I live in constant fear of him having another stroke.  I know the major risk factor for having one is already having had one.  I read everything I can get my hands on about strokes, as well as all my husband's other related conditions.  A helpful part of advocacy is knowing the facts. 

 

I will never know how your husband survived through so many strokes, or how you did right along with him.  I would love to hear any information you might be willing to share with me, or any other experience and advice.  I would hate to impose, but it looks to me like you are the mentor I have been looking for.

 

I am very open to chat but am having trouble on my tablet seeing where to select the rooms.  I cannot see anything on the left beyond the solid black border of the initial chat area.  If I remain unable to chat however, connecting with you has already been a considerable relief.  Thank you so, so much again for reaching out and understand the emotions I have stem from very valid circumstances and not just me being ill of nature.

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Thea :

 

welcome to best online stroke support group. stroke affects the whole family & puts every one out of their comfort zone. I know this since we have lived it  & have come out of it alive & stronger than before. I stroked at age 34 which left me retired me from the job I love & paralyzed on my left side. After 4 weeks in ICU & 3 weeks in rehab , I was so eager to go home but when came home realized now what, I was in deep depression I depended heavily on hubby's strength till I found my own inner strength. my hubby held our fort took care of our home, young son & ton of paperwork.  Right now your hubby needs you & you got to be stronger for both of you. remember things are not going to be this way forever, its going to improve it just takes time. I feel fortunate that it as me who suffereed stroke  & not him cause I don't think I had that inner strength like he had to take care of me, our family. Today after 16 years on this journey I can view stroke as an speed bump on my life to enjoy scenery along the way & remember my son who was in 2nd grade at the time of my stroke is now becoming doctor, & my marriage is much stronger than before next year we will celebrate 30 years together being married.

 

though I found blogging & chatting with other survivors very therapeutic for my soul. we do have scheduled chats every day in the afternoon from 3-4 EST in stroke support room #2 & in the evening from 8-9 PM EST on M,W & F. on friday we have chats in the coffeshop in the evening though M,W its in survivor room #2. hope to see you there soon. I do host chat on Wednesday & Friday evening

Asha

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Hi The a.

Please don't feel guilty about looking after yourself and finding a hobby.

As a survivor, there can be guilt in how the lives of our caregivers are turned upside down.

To have my husband and kids have their own interests and time for themselves is extremely important to me.

💚

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Hi Thea, I know you know this but sometimes it helps to say it "out loud" Your anger and frustration at the doctor does not help and even if they had tried to change things it may still have been too late to prevent the stroke from happening. The media like to tell us that stroke is preventable and having one is "all our fault" but the reality is that there are thousands of factors that combine to "cause" a stroke and usually there is no one change you can make that will prevent a stroke from happening.

 

The reality is that it has happened and you both need to pick up from where you are now and go forward. This is not the path either of you planned and yes it sucks. But it now is.  So draw a line under it step over the line and get on with life worry about the future, the past is done now.  Certainly look into counseling to help you to draw that line, and find a way to let it go into the past.  If you need a quick fix drugs might help but they tend to be a long term solution to an immediate problem, but that's up to you. Talk to you doctor and make your own choice.  Personally I find meditation and yoga more useful.  Do not be ashamed to spend time looking after you.  It's like the oxygen mask in the plane fit your own mask before helping others.  Caring for the carers is a vital part of long term caring for others.  Mourn if you need to, but also be aware that the husband you knew is still in there he's just a bit trapped at the moment. Speech therapy will help, make sure he's getting it and help him to practice. This is just as frustrating for him as for you.

 

((((HUGS)))) you can do this

-Heather

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Thea, how are you managing? I'd like to think we like help in some way even if it is just so you know someone is thinking of you. Life can be so hard some days so why not come here and vent and get it off your chest? Sometimes just writing it down seems to make it better. Thinking of you.

Sue.

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