caregivers...where are you?

[swilkinson]

As Caregiver Chat host and as a person who has been a caregiver for nine years I do what I can to be a help and support to people in a similar situation. But just lately I have noticed that very few caregivers are posting in support of the newbie caregivers coming onto the board. Please make an effort to do so. You will never know how much you have helped someone else to hold on, to believe there is hope and to be able to learn from your experience.

 

To those newbie caregivers who read this but don't reply I would encourage you to look on the board, find someone with similar problems to your own and post a reply to them, to encourage them, to help them feel they are not gong through this alone. You could send them a PM too if you don't want to post. Do you remember those first few encouraging replies you got? Now it is your turn to be the cheer leader.

 

To those survivors who are so supportive of newbie caregivers I want to say a BIG thank you. You are doing a marvellous job and making this board the caring community it is.

 

Sue.

[Guest Pjoy]

Dear Sue,

I hope I am not in the group of ignoring our new members. I try to get a welcome out but may be missing some....I wlll certainly look harder at the new posts everyday. Anyone new is always welcome to PM me. I do remember my first few posts and remember the feeling of relief that I was not alone. Even though I lost Seth, my husband.....Steve has allowed me to stay on with you guys. I want to return the favor however possible....you all are like family to me now and have helped me to get through some of the hardest times in my life.....Blessings to all..........Joy

[givincare]

You are assuming that caregivers are NOT sending PMs. I post when I feel I am able to contribute. Sometimes I know that the situation they are dealing with is much different that what I went through and don't feel like I have the experience to be of help. I do try to be encouraging and make newbies feel welcomed. From time to time, it is still too painful for me to respond. Even after almost four years there are unresolved feelings about what stroke has done to my life and that of my husband's.

 

Maybe more caregivers don't post because they are busy care-giving. Maybe they don't always have a lot left to give at the end of the day. If you have noticed, most of the members seem to be survivors, which makes the percentage of people able to respond who fit in the "caregiver" category smaller in comparison. It seems the majority of newbie caregivers join, make a few posts then disappear. I love you Sue, but I don't want to be made to feel guilty about my interaction here. I realize you are not pointing the finger at one person, but by NOT pointing the finger you are including ALL caregivers. Maybe you should PM the ones you feel should be contributing more instead of putting a blanket accusation/post on the whole group of caregiving members. I am sorry if you feel I have let down the Strokenet community in any way.

 

Kristen

 

 

 

[swilkinson]

Kristen, I am not accusing anyone, just trying to rally some support. I have been absent a lot from the board lately so maybe there is a touch of guilt transference too - you know, if one is guilty then all are guilty and I know I am guilty!

 

You are quite right, I do not know who is sending PMs, but I do see that survivors posts have many replies and often caregivers posts do not. And that worries me a bit. Are newbie caregivers maybe not posting more because they feel unsupported? And you are right, caregivers are a lesser percentage and many, like you do, work as well as take care of a dear one, spouse, parent or child.

 

Like you I do not always buy into situations that remind me of how much help Mum and Ray needed from time to time and how guilty I felt because I have to choose who got my help. Remember I had to put Mum into care in order to give my time to looking after Ray. BUT I can still say "hi there, welcome, we are here to support you" and maybe just not respond to the subject matter of the post. I know you are one of the members who act as a welcoming committee and I do commend you for that and others too like Joy who do the same thing.

 

However I still want to encourage more caregivers to get involved.

 

Sue.

[Susan M]

I guess I felt too new to all of this to be of any help. I am still so emotional and angry - I run through those steps of grieving and am afraid I would say the wrong thing. I do know some facts though and I have been through the beginning so if I can be helpful then I will try. If I say something I should not then just slap me - gently though I am a bit fragile myself at times. I do have a very dry sense of humor and am cynical and sarcastic - those who know me think I'm funny - those who do not think I am crazy, those not sure just stay away. Take your pick. I will do my best.

[Guest Pjoy]

Susan,

None of us are experts and it's ok that you are new....sometimes all someone is looking for is a kind word, anything to keep that spark of Hope alive.............Joy

[arogers]

Hi All,

 

I think it's good for all of us to just post a "hi" to other caregivers, and maybe this is a good place to do it! I remember when I first posted how wonderful it was to know I wasn't alone. Even though my experience my not be the same as someone elses, I knew there was somebody out there who had the same fears and thoughts I had.

 

There was a time when I'd be first or second to post, these days and especially the last month it's taken a little longer since my husband had three trips to the hospital. I remember four years ago when I first posted and Sue said she had been a caregiver to her husband for five years and I thought that would not be possible for me. We passed our four year mark in October and I can't believe how the time has flown.

 

Just like survivors are all different and there are no two stroke alike, so we caregivers are all different. One caregiver's solution to a problem we face may not work for us, but the more we hear from others the more choices we have.

 

Thanks, Sue for the reminder! Let's just consider this a roll call!! :friends: :friends:

 

Warmly,

 

Ann

[bstockman]

I am a Survivor, I have been a CareGiver twice in my life.. not stroke, but caring for loved ones. I think a Warm Hi and Welcome is always posted to someone.

 

As survivors we understand how important our caregivrs are in our lives. Some survivors have more damage and may have a lot of emotional issues. Stroke is not one sideds and touches all. The survivor may have the deficits, but the cregiver is also learning about deficits, and some can be very subtle and take time to understand.

 

It is not easy to lose one's independence and ask for help, It is not easy for the CareGiver to take over chores and responsibilities of daily life, but finiancial, be a medical advocate and look after the loved one. Stroke is a many edged sword .... each one.. caregiver, survivor, family member all learning and trying to cope. The first year in the life of stroke is the worst, feeling our way in the dark at times, then life slowly adjusts and we find a type of routine that works.

 

We all give what we can, when we can, sometimes we are overwhlemed with appointments and life.. sometimes something may poke a bit too hard... but this is one heck of a cyber family.. reaching out to each other however we can.

 

I thank you all for being here.. whenever, however you can

 

Love to you all, Bonnie

[mekelly]

I have to say that however well meant-this was not what I needed to read today.

 

Between caretaking, working full time, trying to make this a reasonably good holiday for my Mom and dealing with the fact that my best friend was diagnosed with cancer last week-- I feel like I am disappointing everybody, all of the time.

 

I am burnt out. Many caregivers who post here are burnt out. We keep on -because there are no other acceptable options for the people we love. This time of the year is especially hard. We have even more to do, even less time, and even more expectations that we place on ourselves or that others place on us.

 

And I come here when I can because there are others here who, "get it"; who get how hard this is for everybody involved; who get how most folks bail and how those of us who are left have an even heavier burden because of that; who get that with a stroke hard work does not necesarily mean results; who get that fear and pain and sadness are going to be part of life for the foreseeable future; and who get that despite this part of our job is to move forward and try to find joy in what is a hard and sometimes tragic situation.

 

But I have to say that you aren't quite getting it here. When I don't post it is because I have nothing left to offer. There are days when I am drowning and cannot offer a helping hand and days where what I have to say is too sad or too angry or too darn ugly to put out there to someone else who is struggling mightily and needs encouragement, not ugliness. Suggesting that is my, "turn to be the cheerleader" (while possibly true) is not helpful.

 

I don't mean to be harsh. I know that what you trying to do is offer encouragement and that you are trying to do so because of your own kind heart. But please understand that most of us are already doing the best that we can.

[Susan M]

One minute inside this caregiver's head:

 

I sure know I am doing what I think is the best I can as a caregiver. I wish I was in a financial situation where I could afford fulltime home care for Jackie or did not have to work a fulltime job or could pay someone to take care of our home and 15 acres and animals and help me figure out this whole Medicaid apllication - they've got me twirling like a top. I need to eat - well Jackie does the cooking and I can cook but I don't want to and what if I leave the stove on - I have already left the outside hose running and the refrigerator door open for 20 minutes on a 90 degree day. And grocery shopping - well what is up with that nightmare - I don't know what all those cuts of meat are - that's Jackie's domain. And getting the animals to the vet and the furnace cleaned and pool closed and Chritsmas cards out - did the phone just ring - was I suppose to be somewhere? And despite the stroke Jackie's short and long term memory are better than mine - how did that happen? When was the last time I shaved my legs - or Jackie's for that matter? Where did I leave the telephone bill? It's snowing again. I need to plow. I wonder if I left the refrigerator door open ............I hope Jackie is tucked in for the night.I need to cut her toenails too. I don't care about mine right now......I need to put the recycle out.......check the frig on my way........get better Jackie......I love you.......

[dstraugh]

Our dear caregivers, our Angels here on Earth - and they are, are so so busy compared to many of us survivors who have the added time to sit at the computer to read and post. There are many times though that we survivors may not fully understand what our caregivers and other caregivers go through to be educated enough to be of assistance to caregivers when they post. I have never been a caregiver myself but being a fill-time working mom before stroke and a single parent, I can understand the thoughts of Who am I. When my daughter was little, I realized I needed a life outside of working and caring for her as I walked around humming "Hi Ho Hi Ho it's off to work I go....."

 

The love, support and compassion to our caregivers I can do, but the knowledge to assist them in caring for a survivor may not be there as I've not had personal experience - only what I 've learned here. Perhaps as caregivers read the forums they might have the chance to pm a member who has written about something they have experienced in their journey with their survivor. Or perhaps if they know a caregiver is having particular issues they could send them a link to a message board thread they found helpful.

 

If I, as a survivor, can be of assistance to caregivers - as in doing internet or strokenet research - please pm me and I will be glad to assist.

[swilkinson]

I too have that: "I don't need this right now" feeling, and when I do I don't post. But I do post on the days when I am feeling strong, compassionate and helpful. I still have days when I feel sad, mad and just plain bad, after nine years that doesn't vanish like smoke it just occurs less frequently. On the bad days I blog! But I don't always publish those blogs, or I cut them back to what I consider fits the situation more the following day when I do hit the "publish" button.

 

I know we are not experts, none of us ever having all the answers, maybe even sometimes being way off the beam. But just knowing that others are frail human beings like I am helps me to be "okay" with being less than perfect.

 

At least we are having this discussion eh?

 

Sue.

[Susan M]

the refrigerator door was open........no wonder the heat was not shutting off..............can't wait to see this months heating bill.................at least I made myself laugh - at me - made all of this worth it.............and at least I have some folks to share it with........I am alone here............I get great comfort from this site just reading your blogs and posts. ANd I have learned much from your experince and I WILL be asking many more questions.................I am going to check the refrigerator door again this morning - just what you want - a caregiver with OCD........

[swilkinson]

Susan, we caregivers are almost crazy sometimes, it goes with the territory. When we hae a crisis here I lose everything, car keys, watch, change purse, you name it. I have so much to take into the car when I take Ray out with me I feel as if I am back in the days when I had to take all the baby gear and went off and left the baby ( lucky I always remembered and came back for them eh?)

 

On a serious note we are all suffering from stress, some more than others. It does relate in some ways to the level of care your survivor needs, the time you spend in face-to-face care, the breaks you get. You can also factor in resistance or lack of assistance from the rest of the family, the turning away of family and friends, the isolation you feel because you have given up so much that sometimes there seems nothing left. Add the difficult personality changes your survivor is going through and maybe the onset of dementia and it is natural to be stressed.

 

I can tell from some of the replies here some of you are very stressed and maybe close to burn out. I never meant this to be a personal attack on anyone, just a reminder to some of the "lurkers" old and new that it means something to a newbie when someone adds a reply to a post. So please don't be sensitive and think I am getting at you...just share your experiences as much as you are able to and be supportive.

 

Sue.

[Guest Pjoy]

Dear Sue,

I think you are right that we all are stressed out , even me ...I don't have Seth to care for anymore but losing him last summer is still an emotional nightmare. I also think it is good that we are talking to one another about all of this. Maybe we could do more personal messaging to one another on those bad days....it sounds like alot of us are going at it on our own. I always have a listening ear for anyone who needs to vent.......I am praying for us all........Joy

[HostAsha]

Sue:

 

I see your point of view & first time I realized even being survivor I can lend words of encouragements to newbie caregivers. letting them know that life will be better soon too. I stay away from message board thinking I will not be any help to any of these people. I find post stroke journey is tough journey & we all have to go through our fears, our insecurities to reach it to the serene place in our own time

 

Asha

 

[givincare]

To those survivors who are so supportive of newbie caregivers I want to say a BIG thank you. You are doing a marvellous job and making this board the caring community it is.

 

Rather than thanking just the survivors who post , how about thanking all those who post and are supportive? Am I not deserving of a thank you? Am I not doing a marvelous job? Am I not making this board a caring place???

 

I know you want to encourage caregivers to become more active. But this has had the reverse effect for me personally. Maybe I am arguing semantics here. I just feel a post saying "I am disappointed more caregivers don't post. I would like to challenge all of you who have benefited from a kind or encouraging word from someone on the site to make it your mission to find a new caregiver here and remind them they are not alone. I challenge you to be the person you first needed when you were new at all this. And thanks to all of you who already do this in one way or another everyday" would have been more conducive to your goal of getting caregivers more "active".

 

Your original post made me feel scolded and unappreciated.

 

Kristen

 

 

 

 

[dstraugh]

Pay it Forward is a fantastic belief.

[swilkinson]

Kristen, how you feel is up to you. We all have some pre-conceived ideas of what words mean, how things need to be phrased, what is encouraging and what is not. That is what makes us all unique individuals. And remebering I am an Aussie and I do say what I mean, so you have to maybe discount regional differences too.

 

Think about support as us all holding hands in a circle. We all, caregivers, survivors , family members need to receive suport and to give something back, "pay it on" as Donna says. So we need a "two handed" approach. I have Ray who only has one hand with a grip and one floppy hand. When we have a circle of prayer, the grandkids, even the youngest now, knows that they hold Pa's hand as he cannot hold theirs. How is that for a model of support. BUT Ray's prayer, one handed as he is, is just as valued as anyone elses.

 

The reason I thanked the survivors for posting is that this is the Caregivers forum, we are suppose to be keeping an eye on this and using this for our postings. I want to encourage the survivors to come here too. Because as Asha said she as a survivor has something to contribute too. We all have need of support and we are all capable of giving support ( down days excepted).

 

You may be right and I am going about this the wrong way but Molly Brown got the point I was trying to put across so....?

 

Keep up the discussion, I think we are getting there.

 

Sue.