Dad not same after stroke, mom & I r freaking out


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My dad had a left-brain stroke on Dec. 30th. He regained all of his memory and can speak, but can't always bring to mind the words he wants to say. The hard part is, *he is not the same person!! * He was healthy and extremely active (age 84) before the stroke, and now he just sits in his chair and doesn't do anything except read the paper. (Right before the stroke, he had been helping a neighbor with heart problems put up a fence.) Normally he would watch TV a lot in the winter, and now he just stares into space with the TV off. He used to hunt, and he is going to sell his hunting dogs. When anyone visits him (including me), he will tell the same stories over and over about what happened right before his stroke and what happened in the hospital.

 

My mom had osteoporosis and is bent over (age 85), needing a walker. She has vision problems and cannot drive. She is dependent on Dad to help with housework and the yard. Dad refused to go to his last speech therapy session, and said if Mom said anything else about going, he would move out! His first appointment with the neurologist is soon, but we don't know if he will go. Since he hasn't seen the neurologist, he isn't on any anti-depressent medication.

 

I have fibromyalgia and work a full-time day secretarial job. My husband recently took a 3rd-shift job. He has trouble sleeping during the day and at night, I can't do the housework because he makes me be absolutely quiet so he can sleep. I had a horrible year of health during 2007, including a stress fracture in my ankle; a stomach/colon virus a week later which made me dehydrated, necessitating a trip to the ER; a ruptured disc in my back, necessitating an epidural steroid injection; severe pain with the fibromyalgia; and a "mystery" pain in my hip, groin and back which turned out to be ovarian cysts and a bleeding ovary - necessitating a complete hysterectomy on Dec. 3rd, just 5 weeks before my dad's stroke!

 

I feel trapped, overwhelmed and forgotten. HELP!! :(

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I refused to many things my family and my medical team told me to do. As time went on and my health went down hill I had no choose to do what I was told. All I can say is, make it difficult for him until he does what he’s told to do. When I had therapy for open heart in September 2006 and wouldn’t go to that so my wife would run the vacuum in front of the TV until I went. I went just to get away from her. Everyone is different and I can’t speak for your father but for me…what my family did for me, did work. I’m sure it was hell on them but it showed they loved me and still me.

I almost gave up, read here http://www.strokeboard.net/index.php?s=&am...ost&p=71065

Good luck and please don’t give up!

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But my mom is physically handicapped and feels that she is unable to fight him, either emotionally or physically. She is trapped there in the house with him since she can't drive, and the weather here is so cold that her arthritis pain prohibits her getting outside to go anywhere. I have to work - I just got off a 10- or 11-week total Family and Medical Leave, so I can't take time off from work to order Dad around 24/7. I was only paid about a week and a half of my medical leave, and during that time my husband changed jobs and then his hours were cut (the reason he left his last job!). I am the only child.

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what about other family or close friends. Possibly clergy member. You may have to enlist social services to come in and assist.

 

I know you do not want to hear this aspect but it may be time for them to relocate to an assisted living facility. As your Mom is totally dependent on him, legally he cannot just walk out on her.

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Guest lwisman

M,

 

I am very sorry to hear about your father. It has been a very short time since his stroke. Stroke recovery can take years. Stroke is a major assault on the brain.

 

It sounds as though before his stroke your Dad was doing a lot of caregiving for your Mom. It is a lot to ask of a 85 year old with her own health problems and who needs help herself to be caregiver. I would recommend that your research all the ways to get caregiving help for your parents. Do they have the money to hire someone? Do you have a large family who could help? Is there someone they could move in with and would have the time and wherewithal to be a caregiver 24/7?

 

Investigate nursing home possibilities. I know nursing homes get a bad rap these days and you do have to be careful. But, when my Mother was diagnosed with Alzheimer's and neither my sister or I were able to provide the 24 hour supervision she needed, a nursing home was a godsend. Nursing homes these days can provide whatever level of service is needed and add services as they become needed.

 

Good Luck to you and keep posting here. I know a number of people will be able to help you.

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My mom absolutely refuses to go to a nursing home or anything like it. She took care of her own mother (who was handicapped by rheumatoid arthritis and the resulting heart problems) for 11 years before I was born so that she could die in her own home. So that is not an option. I have tried to get my oldest son & his fiancee to move in with Mom & Dad, but so far they have not done it. I work for a charity and my income after taxes is barely over the poverty level, plus I was on unpaid leave for 9 weeks last year. My husband's salary last year, since they cut his hours on both jobs, was much less than mine. We have 2 mortgages. Again, I'm the only child and I'm not healthy, I have fibromyalgia (read the symptoms at http://www.fmnetnews.com/basics-symptoms.php) and work full-time. The only other relative that lives near my parents is taking care of her own disabled adult daughter and her family, so she can't visit my parents much even tho she's retired. Other relatives in town visit as often as they are able.

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My suggestion is to sit down with all family members to discuss options. If everyone agrees with you for no nursing home and you do not have the resources to pay for private home based care, what about through medicare and/or medicaid through the state.

 

I do know that my grandmother did not believe in nursing homes and cared for her mother at home til she passed. When Nan developed Alzheimers, there was no other option but to place her in a nursing home as no family member was able to care for her. She did adjust and remained there until she passed in 2006 - she was 94 years old.

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But nobody is tending to mine and my mom's EMOTIONAL needs! We are grieving for the dad and husband who literally was changed overnight by this stroke. This was a man who at age 84 was fixing other people's cars, repairing his dead twin brother's damaged home for resale, tending his own large garden, mowing his own grass, and keeping up his own house all at the same time. I often bragged that he could outwork a young man in his 20's. For the entire family and the neighborhood, he was the "go-to" person whenever something was broken or someone had a need. That person is GONE, and no one is telling my mom and I (and my husband and 2 adult sons) how to cope with the loss!

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May I suggest reading http://www.strokeboard.net/index.php?showtopic=857 5 Stages of Grief.

 

Stroke affects the entire family - we must each work through the stages of grief involved. Each person is different. Wish there was a magic wand that could be waved to make this easier for all of you.

 

In my case, I was and still am a single mom when stroke entered my life on 1-1-05. My daughter was 12 at the time and quite honestly 2005 stunk massively. But we worked through the changes together. My daughter has stated that she thinks the stroke was best thing to happen. You see, I was a workaholic...I'm now home for her and our critters.

 

It takes time, patience and prayer. You and your family will be in my thoughts and prayers. (((hugs)))

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hi and welcome to strokenetwork. i am sorry to hear about your dads stroke and what is happening right now. you need to realize that the man your dad was is gone now due to the stroke. you need to work on accepting the new dad you have now. a stroke is an event that impacts the whole family. your dad needs to see a neurologist that specializes in stroke, so they can address his emotional issues and talk with you and your mother to help you through this. tough love might be needed with both of your parents. try and get some help from someone. there are places out there to help. medicaid might be the way to go. you should be able to take a leave of absence from work under the family/medical leave act and receive a salary. this is something that just happened in life and you need to get through this the best you can. i know its hard. my stroke at 48 turned my world upside down, prevented me from returning to work, so now my husband is carrying the entire load on his shoulders and he had a heart attack a year before my stroke. so i understand what you are going through. i receive ssdi now but it doesnt compare to my salary. i found a lady to come in and help us 3times a week for cleaning, food prep and help with my showers and anything else i need. help is out there if you look for it. i do know that it gets better with time. i wish you lots of luck and i will send you (((hugs))) and keep your family in my prayers. you are not alone in what you are going through.

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Hi, Sorry to be a bit blunt here. Your DAD is 84 and had a stroke less than a month ago.

 

HE HAS HAD A BRAIN INJURY...... For the first 3 months I was in a FOG, I slept after any physical or mental activity. I could not even follow a sitcom on TV.

 

Somebody here needs to get a grip..... Your parents need someon in the house to look after them. If your Dad was ever in the Armed forces contact your local VFW or American Legion. If they have Insurance or medicare contact someone to find out what type of benefits they have for home help.

 

I am sorry about your own health, financial and emotional problems.. BUT Right NOW your dad is NOT capable of taking care of your mom.

 

You may want to look into some assisted living places for couples. Work with relatives on selling the brothers house... is that money to be spit? maybe they could use it for CARE. Also Look into Meals on Wheels, they will bring cooked meals to your parents.

 

Contact the Social Worker or Hospital Liason, Community Action for Disabled, Elder Care.

 

I am really sorry to hear about all the problems.. but someone needs to take charge here and GET them help.

 

 

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I am also sorry to be blunt, but I HAVE FIBROMYALGIA, AN INCURABLE DISABILITY CAUSING SEVERE PAIN, which I have had from birth; and along with that comes chronic depression. I have had serious health problems for the last year, and I am not emotionally or physically able to "get a grip" and deal with making decisions for anybody. I'm a long way from completely recovering from the health problems I had. HELLO - WHERE IS THE SYMPATHY FOR ME?? I AM ALSO IN PHYSICAL AND EMOTIONAL PAIN AND NEED! My mom is not as disabled as you all are thinking, just because she walks outside the home with a walker. She walks inside the house and up & down stairs unassisted without a walker, cooks meals, dusts, and washes clothes when they are carried downstairs for her. And again, my dad does not have any *physical* disability; it's just his thinking and reasoning that is not right. Neither of them are bed-bound. As long as one of us in the family can bring in Mom's mail, take her clothes downstairs for her, grocery shop for her and vacuum, she is taken care of.

 

Dad was in the Army and injured in the war, but they cheated him out of his pension while he was hospitalized with the injury (an Army truck wrecked & turned over on top of him, breaking his back and paralyzing him temporarily). Therefore I doubt we could get any type government help.

 

I Need Help And Support for *ME*, too, but apparently I am not going to get any here. I am just going to get attacked for requesting help - the purpose of this board for caregivers. So I might as well crawl up into a little ball and forget it. I GIVE UP AND I'M NEVER COMING BACK TO THIS BOARD AGAIN!!!!!!!!!!

Goodbye

 

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Hey MCallis sorry I didn't catch up with this post earlier. This is a caring board and we are all trying to help but we are all looking at this from different points of view. It is hard to see all the component parts here. I can feel you are in emotional pain but can't see what it is all about. Is it because your father, who was the strong one is disabled now? Is it because you would like to take up the slack and can't? There are no instant solutions and no-one can reach into your world and provide instant help, emotional or physical. Even your own husband because of his new job really can't support you emotionally. I do feel for you. This is a rough time for you.

 

I am Sue, caregiver to Ray and in 1999 after Ray came home from 4 1/2 month hospital stay after two major strokes I moved my parents in too, Dad with terminal cancer, Mum with Alzheimers. I looked after all three for four months until Dad died in January 2000 and then looked after my husband and Mum till September 2002. It was hard work looking after people with differing needs and disabilities so I do understand a little of where you are coming from. I moved my Mum into a Dementia Lodge in 2002. By then I knew I couldn't look after both her and Ray. She took a while to settle in but is still there five years later. She will be 90 this year. On her own she would have died of malnurtrition long ago.

 

I do regret the fact that I couldn't be superwoman and do all I wanted to do for everyone's best interest. I am human. I get tired and I get cranky and I sit on the pity pot. But that is okay. I am human, a real flesh and blood woman and I am doing the best I can for those I love.

 

Please give yourself a break from worrying, this is a problem that you need help with over time and it needs a lot of people focussing on it to see the solutions. I know how much you are hurting, the same way I remember my own pain when I realised the only solution was to put my Mum into care. But I also know that I had done for her all I could. So no lasting regrets now. Give it all time. Your father may become interested in life again, your mother may learn that she has to do more, your family and friends might be able to help out a bit more. I wish there was more that we could do to support you.

 

As others have said it has been only a short time since your Daddy's stroke so it will take a lot longer before you know exactly what the future holds for your parents. I wish I was there to give you a hug, I know that is what you need more than anything. Just hang in there and be patient with yourself and with them.

 

Sue.

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bstockman,

 

Someone needed a dose of reality and you handed it out. Sometimes, people don't want to hear it. It appears that someone was coming here looking for their own sympathy. Which was given in the right doses as seen in the posts.

 

The people here are always warm and caring. I am witness to this. My stroke was three months ago and I'm still in a FOG, and people will have to call me to snap me out of it. My sister especially asks me a lot what the heck is wrong with me. I tell her, I dont' know, maybe the stroke? She's like oh yeah, likely excuse...so who cares? That's what it is I'm guessing. I'm good with it.

 

I too have Fibromyalgia. Big deal. I've had it for over 15 years, I also have Lupus. Again, Big deal. It's just a part of what I've been dealt, It doesn't mean for me that life has to stop, or that people have to acknowledge it. It just means that I do and that I have to take more meds than the average Joe. 10 of them a day. That and I am more careful about health issues. I've had a stroke now. Just another added bonus.

 

But I don't use these things as a crutch to not be there for my kids, and they never stopped me from caring for my parents while they both were still alive. It doesn't make me a better person, Just different. If I'm in pain, I just go slower, but I never stop.

 

I think the Original poster is under a lot of stress right now, and hopefully they'll come back and see that no one here was actually attacking them and that we were just trying to offer the best advice. Because we've all been there and done that.

 

I wish them luck.

 

 

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I came here today because someone had sent me a message after being away for a long while. She wanted to know why. I gave her my answer then read this post and think I have better insight into why I don't come often. MCallis and I have a lot in common. We are both only children; we both have fibromyalgia; we both suffer from depression; we are both dealing with older parents; we both have lost a very important person to stroke. (My grandmother expressed it as being a widow without a dead husband).

 

While all the ideas expressed so far are excellent, most do not seem to touch the heart of what MCallis is asking. She didn't come to get answers on how to "fix" her parents problems. She came because she wanted to "fix" her own - these go way beyond just the stroke. She feels overwhelmed by an unending series of devistating problems of which the stroke is just the last one. I feel like she is asking "WHY ME? I CAN"T TAKE ANYMORE!" Possibly her beloved father was also the one who she went to for strength when she needed it too.

 

When I came to this place I was looking for help in dealing with my husband's stroke but even more I was looking for maybe a sympathetic ear that understood that I felt my life had been stollen from me and I was a victim of a wayward blood clot as much, if differently, as my husband. In other words, my husband has a caregiver - I do not.

 

Maybe this helps explain MCallis' frustration and anger. Maybe she comes back. Maybe another forum would be better for her to find the support that she is seeking. While we all need the VALUBLE input that has been given on how to help our family members who have had a stroke, hopefully this will help remind us that family and caregivers need answers to their own hurts as well.

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I was not trying to be "callous" Stroke affects everyone involved.. including family pets.. It is devastating to all.

 

One minute you are fine, walking talking, intelligent, clear thinking, a loving spouse, parent, friend, etc........ the next moment after the lightening bolt enters the brain ... it is GONE for everyone The World as you know it is changed...

 

Some survivors come out with little physical deficits, some work hard to recover physical abilities ..that were once never given a moments thought.

It is hard to see sometimes... the brain has sustained a great injury. Thought process, abilities are not clear. I felt like someone had picked me up and dropped me on another planet. It was extremely hard to focus on people talking to me.. especially if it was complex and required more than a yes or no answer.

 

The strong, independent person is NOT there anymore. The person who took care of everyone else, now needs help.

 

It is hard for the survivor, it takes at least 6 months for the brain swelling to go down and for the clot to dissove. It is hard for the spouse, children.. they are thrown from loving family to caregiver role in the same instant. Not easy to watch someone you love struggle in any situation.

 

The survivor has to deal with what the h____ happened, why dont my limbs work, why can't i talk intelligently, why can't i add 2 + 2. The family/spouse now find themselves SHOVED into having to care for someone, make decisions for someone who always took care of everyone else.

 

someone has to be an advocate . I don't see anyone raising their hands ... No one wants this.. either side.. survivor, or caregiver. It is not a choice we had it was thrust upon us. Not something coming on SLOW where you can adjust... WHAM in one freaking moment.. it is GONE

 

I see it as the survivor is the "weakest one" at this point. the most vunerable one for awhile. So even though the spouse/family want to crawl in a hole also and want to run screaming..... WHY . I don't deserve this. NO ONE desrves it. NO ONE WANTS IT.

 

Veteran's can call the VFW or American Legion. The discharge papers..are needed. and forms filled out for financial aid. to qualify.

 

Getting home help, knowing someone can help look after your loved one.. should help take some of the stress off the family and a break for the caregiver. Also with VA... if a wife is disabled there is home care available for the wife as well.

 

Help is out there... Getting help will help you...

 

Being a stroke support site, I think when I read a post of helping the survivor... helping to get some home help or respite care for the caregiver.

 

I have been a CareGiver in the past before I was a Survivor. I understand the pain of watching a loved one in pain, suffer etc.

 

I am sorry you feel we are not supportive.......Other than saying I am so sorry you have to go through this. And I am very sorry you have health issues of your own.. and now you are dealing with the stroke issues of a loved one. I guess trying to give tips or advice to help you with the survivor or wondeful tips .. from our Caregivers.. We do have empathy for you, your family the survivor. We are about support and trying to move on to the next step.. we all have down days.. and need each other to cheer us up. But we are Survivors and not Victims....

 

Here is a link to a Wonderful Blog just written by one of our staff/member who is a CareGiver ..... I think it is sooo beautiful please read it http://www.strokeboard.net/index.php?autom...;showentry=6690

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I am a caregiver and completely understand the frustration that is being expressed.

I do not come to this site as often as I hoped I could when I first discovered it.

This is the CAREGIVER Section, but when a caregiver posts, all you survivors jump in with your story, your answers, and you go on about what a caring loving group your are, I am sure you are only trying to help, but and there is a but, when I post on this site I feel criticized and don't feel I can vent.

I am told at the beginning of the site that I can post even if it is just to vent, but venting does not mean I want answers, or for anyone to fix the problem, or give me a dose of reality, believe me the reality is right in front of my face as it is with all caregivers. Venting is just being allowed to say things without reprisal.

There are a lot of platitudes on this site, they may be helpful but most of the time, I just want a sympathetic ear.

There are not many caregivers that post for very long, ever wonder why??????

DJ

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I am a caregiver and completely understand the frustration that is being expressed.

I do not come to this site as often as I hoped I could when I first discovered it.

This is the CAREGIVER Section, but when a caregiver posts, all you survivors jump in with your story, your answers, and you go on about what a caring loving group your are, I am sure you are only trying to help, but and there is a but, when I post on this site I feel criticized and don't feel I can vent.

I am told at the beginning of the site that I can post even if it is just to vent, but venting does not mean I want answers, or for anyone to fix the problem, or give me a dose of reality, believe me the reality is right in front of my face as it is with all caregivers. Venting is just being allowed to say things without reprisal.

There are a lot of platitudes on this site, they may be helpful but most of the time, I just want a sympathetic ear.

There are not many caregivers that post for very long, ever wonder why??????

DJ

 

Okay, everybody take a deep breath.

 

All of you have valid points and yes, djgr, I am speaking from a survivor's point of view, but may I suggest that what McCallis came here looking for is not readily available - one to one counseling where the therapy and the discussion can be all about her and how she feels.

 

McCallis, I'm sorry you felt unsupported and unsympathized with. We are not, however professional counselors or therapists - therefore we do the best we can do......we do not encourage pity parties - we are a survival group and while feeling sorry for yourself and your predicament is a natural and normal part of the grieving and recovery process, if you get stuck in it, then most will not want to hear about it in a posting without offering suggestions and help on how to get out of the rut. Blogging is where it's at for you girl!

 

djgr - I am particularly sorry that you have not felt supported on the site - venting is allowed and very encouraged in the right venues... these are outlined in the instructions for newbies...There are areas set up for personal venting - there is much space for blogging(the perfect place to vent without being overwhelmed)..you can even just vent to yourself without posting it publicly. I would humbly suggest that a blog would be the best solution for both you and McCallis - along with some counseling if you do not already have it.

 

Posting, by it's very nature is universally viewed as a cry for help , blogging is universally recognized as a personal space for someone to rant and rave all they wish - so please forgive us for being what we are: stroke survivors - we know it's extremely rough on our caregivers and have a deep appreciation for our respective ones as well as the collective.

 

We are NOT here to bear the brunt of someone's anger and frustration - again, we are not counselors but do offer friendship across the'net.

 

 

Wishing you peace, calmness, strength and acceptance,

Mel

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That was a great post, I hope everyone takes a deep breathe and steps back for a minute.

 

I am a survivor, and upon joining here was helped greatly which I cannot begin to express my appreciation to all. But I as well try to help in my own way, I do not sugar coat things but do supply a sympethetic ear, basically I can be blunt and tell it like it is which some do not want to hear.

McCallis, I'm really sorry you feel unsupported and that we are not sympathetic to your situation. We are not professional counselors as has been already stated, but we are here for you even if you don't think so.

 

djgr - I'm sorry you feel as you do, we're here if you need us, fent away. Although I'm concerned that you don't want imput from anyone but caregivers, if that is the case then right off the bat state this in the header of your post and I'm sure everyone will respect it .

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BAM!!! That was the sound I just heard; a door slamming in my face. Though I do not believe that was the intent of anyone, non-the-less I felt that way. At the introduction of this part of the message boards it states:

"Are you down and out? Do you need to vent? Or do you want to share something positive? Whether you are an actual stroke caregiver, a family member, friend or loved one, tell us what you are feeling and what stroke related issues you need support for or just want to share." emphasis mine.

 

What you are reading here is a call for understanding and help. Most likely most caregivers who visit this spot initially are looking mainly for other caregivers who may have a sympathetic ear. There is so much available for the stoke survivor. In my case, my husband gets the long list of doctors, therapists, councellors, social workers... This is GOOD and I am thankful for all of it. However, there just plain is not the resources for me. I have a whole different boat load of challenges. I am taking care of my husband and I need support and help for that. In that arena I value input of survivors extremely high. I also need to take care of myself. I come here to find help for that as well. It is in that arena that I still feel this message board is still lacking.

 

Mel says, "we do not encourage pity parties - we are a survival group ..." We have all had pity parties and sometimes the quickest way to get over them is to tell someone about it. Many times though it has nothing to do with a pity party but rather an honest burnout; an overwhelming sense of not being able to hang in there a minute longer. Just because I am going through a tough time does not mean I am not a survivor. My purpose for seeking support is proof that I am being proactive in trying to overcome the difficulties at hand.

 

When tough times happens to a stroke survivor, people in general are more understanding. When it happens to caregivers many people in our world look at us and say how selfish we are. Worse still is that we believe it ourselves! That adds bucket loads of guilt into an all ready stressed mind. In these situations, I am not sure that anyone who has not been a caregiver can really understand anymore than I can truly understand what it feels like for my husband not to be able to talk. I have not been in his shoes. So MAYBE being sensitive to this truth may slow down some responses which may come across as insensitive.

 

To quote from Mel again, "Posting, by it's very nature is universally viewed as a cry for help , blogging is universally recognized as a personal space for someone to rant and rave all they wish". I agree with this statement. I do not agree though with the conclusion that the only place to vent is in a blog. Sometimes we need feedback to our feelings that we are venting and by posting rather than blogging we are asking for that.

 

PLEASE PLEASE understand that I am NOT telling stroke survivors to "go away and leave me alone." We all need each other. I am simply trying to raise a red flag here pointing out an area in which caregiver support is lacking.

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Wow, this is one of the best discussions we have had in ages! There are elements of truth here! We are not just patting each other on the head and saying : "There, there" we are actually getting down to some of the frustration in our lives and telling each other about them.

 

Just a warning not to take any of this "home" with you. What is printed here is not about you personally it is about US, us as caregivers, us as survivors. So I would like to wave a white flag here and say "take it gently people".

 

Most of you know my story. If not you can go to my blog: "Sue's Sentiments" or read my Bio in the Gallery or come straight out and ask. I have been a caregiver to Ray for eight years. I have been a caregiver to my parents, I have been a telephone counsellor on a help line. Most of what is here from the caregivers I have SAID. I have asked for a listening ear, I have expressed my frustration, I have said to survivors and caregivers alike: "Some days it is hard for me". So far, among the answers I have received I have heard sympathy, empathy and that right comment that tells me someone else recognises my pain. I have to be content with that. No-one else walks in my shoes...I understand that. But I also know most of the regular posters do try to put themselves alongside me. I appreciate that so much!

 

Ruth and DJ, you are right. No-one knows what it is like to be a caregiver some days. The apathy, disinterest, orneriness (if that is a word) of your survivor, the unsympathetic , disinterested reaction from friends and family ("when is he going to get better?"), the half-hearted attention of doctors and health professionals, the hurts from all and sundry can grind you down. And we are right here! We are the ones who stayed, so how about a cheer or two for us "angels" some times please?

 

But I think what we failed to recognise in Melissa's post, and this is Melissa's thread not ours, is that the long distance aspect of caregiving, the lonely, "I-can't-do-a-thing-to help" feeling was not acknowledged in the way she expected. Sorry Melissa. I can feel an echo of your pain but have not been in that "unable-to-help-though-I- want-to" position myself. Maybe some of the survivors have been. Have you had calls on your help but because of your disabilities could not help? Well that is what Melissa is expressing here.

 

So venting is allowed here, I agree that for full force long term venting a blog, left in draft form, hurts less feelings, or causes less controversy, but it doesn't allow us to air our feelings in a wider forum and that is sometimes what we all need to do. So we are all entitled to our opinion but make sure what you post is supportive, kind and generous in spirit, we don't need what is unsupportive, we don't need finger pointing or blame,we ALL need support here.

 

Sue.

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I am a family member and a part-time caregiver to my Mom who at 10 months post stroke still needs 24 hour care. I understand the feelings of loss ( she is never going to be the same person) and frustration and anger and self-pity. I certainly have days where I want to cry because nobody is taking care of me and I am sick and tired of taking care of other people.

 

I HAVE found sympathy and help for caregivers here at this site. People have repeatedly offered tips and suggerstions, or even just said to hang in there. It may not fix anything but it helps. I have received sympathy and empathy for how hard it is to be a caregiver. And I have heard from stroke survivors who understand how it sometimes feels unbearable to be a caregiver or family member. However, along with that understanding is the expectation that despite the difficulties, those of us who are caregivers still have to get up tomorrow and do it anyway. That attitude is fine by me. This is my Mother and I love her- and even when I am angry and sick of this, I don't forget that it is much, much harder for her. And yes I am grieving. And yes I sometimes feel that it is too much. And yes it is unfair. And yes, I am going to get up tomorrow and do it anyway. And so is she.

 

What I think some people were reacting to on this thread was not the venting but the suggestion in the original posts that there was nothing that could be done, it was just too hard and so why even try. When I read the original posts it seemed like what was being asked for was not sympathy but permission--

"tell me it's okay if I don't do anything; tell me its not my responsibility". Perhaps I am not being fair, that may not be what was being said or what was being asked for- but it is what I heard. I think it was what a lot of people may have heard. As a caregiver, it is very hard for me to respond to that in any kind of a positive way. There is a chinese proverb - "those who say something cannot be done, should not interrupt those of us who are doing it". That is how I felt when I read the initial few posts.

 

There ARE circumstances where a caregiver or family member cannot help any more. The person is too ill or the survivor needs too much care or the circumstances are just too difficult. People have posted about the heartbreak and the guilt when a caregiver has reached the end of their ability to help. Believe me I am truly sympathetic to everyone involved in those cases.

 

However, we are all very familiar with situations where people choose for whatever reason not to help, when they could. Former friends and colleagues and relatives disappear. They have too much on their plate or they need to take care of themselves or they just can't handle it. Those of us who stay to do the hard work- the caregivers, and family members, and survivors who deal with the grief, and frustrations and joys- we all feel that loss. Their absence makes it harder. More frustrating. More lonely. When something touches that nerve, it is difficult for me to be sympathetic. So, I am sorry if I sometimes do not hear or help someone who is really just looking for comfort. I will try to listen more closely. And for those who are just venting, please try to understand that these topics do touch wounds for all of us that have not healed.

 

 

 

 

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So just is it who gets to decide what is a blogging time and a venting time or a pity party, who decides this and are there certain words that would indicate what exactly I am doing. A list would be nice.

To suggest blogging is funny ( like I don't talk to myself every night, or cry myself to sleep some nights, blogging is much like talking to oneself, no feedback )

OOPS!!! is that a pity party, blogging, or a venting sentence.

 

The point to me about venting is that it releases fear, concern, anger, or any of a number emotions, which we all have.

I have written and posted positive things, asked questions, or raised concerns, or tried to offer advise. It is not always a whinnnne!!!! But if I am venting, a little sympathy would be nice.

 

 

Misslisa said "Someone needed a dose of reality and you handed it out. Sometimes, people don't want to hear it. It appears that someone was coming here looking for their own sympathy. Which was given in the right doses as seen in the posts." (nice of you to decide that the right amount of sympathy was dealt out, or meeked out in my opinion. Everyone has a different reality, some people are stronger than others, we are not made out of cookie cutters.

 

 

I think that McCallis is very new to the stroke community and the first feelings are the worst, scariest, the mind runs to the most dramatic, the scariest outcomes, being overwhelmed is an understatement.

I know from experience that my only thoughts were of GR and what he needed, and my private thoughts were, could I do this, is it to much, how scared I was, most of the time not even realizing how much things were going to change.

A sympathetic ear is what McCallis needed, she has a right to her feelings.

If that had been McCallis's 10th post and she was just repeating herself, I could maybe understand the unwillingness to be kind and caring.

Did everyone miss her sign off, "I feel trapped, overwhelmed and forgotten. HELP!!"

 

I agree with RLT no-one is asking survivors to not respond, but give us caregivers a moment to vent, we hear many of your suggestions from the hospitals, and we will need to hear them again, but at first we (speaking for myself) just want kindness and sympathy, and to know that others are feeling as we do.

 

DJ

 

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