For Caregivers

Well I'm new on the site but am older and am experiencing my first caregiving experience, husband has had a stroke and that is that, and I am left to pick up the pieces everyone else has fled and left the premises. Yes they have been ever so thoughtful with the flowers and cards. The only thing I can think of is how incredibly rude I have been through out the years, how many times all I did was send a card or do nothing after the initial (stroke, heart attack, MS, alheimerzers, dementia, cancer, serious accident, so many things) I think it would be really good to list the things that would really matter. I think it was at the 4-6 month mark that things really changed. All of a sudden I realised that there where no people around and I was very much alone. So I would like to make a list of things that I would have liked to have done at that point. maybe it would help someone else know what to do. I’ve lost what I thought were very good friends and actually might still be, but they may not know what to do and have been regulated to the I hate them land. So I’m hoping that with help, we could come up with a list of true things that someone could do to help, not just blah blah support, how about some concrete actions. I know that I would have appreciated such a list, I often felt WHAT CAN I DO For instance: bring a dinner over once a week and eat it with them go to grocery store and buy a weeks worth of lunches walk their dogs take their kids for a day or longer clean gutters mow their lawn clean their bathroom etc. etc. etc. Suggestions would be great!!!!!!!!! Thanks

Your list idea is a good one for people in the early stages of a health crisis. When I used to work on a stroke support site I used to tell new caregivers to keep a job list with them at all times and when they'd hear that famous line, "If there is anything I can do, let me know" then hand them the list and say in a joking way, "Here, take your pick." That approaches does work.

 

My husband's stroke was 8 years ago and I can tell you I've heard your complaint many times. The fact is that people will gather around when we're in crisis mode but eventually they go back to their own lives and their own problems. They subconsiously expect us to find acceptance and make our new normal lives work without continuous need for support. And in truth, how many of us have stuck by to lend hands-on help to someone for months on end after a health crisis with no idea when the need will end? I searched my heart and I came up short at finding any examples where I did that for someone other than my folks and my husband's folks. So how can I hold my family/friends to a higher standard than I held myself? They were there when I needed them the most those first 3 months and I'll always be gratiful for that.

 

When my husband was five years out from his stroke I threw him a 'thank God, I'm alive party' and there were two couples that I almost didn't invite because I thought they had deserted us in our time of need. They were good friends pre-stroke and I expected more support than we got from them. Well, come to find out at the party the guy in one couple was going through breast cancer treatments at the time of my husband's stroke and didn't want anyone to know. They had their hands full with their own problems. The other couple was dealing with a recent diagnoses of early Alzheimer's and also had their hands full back then. Neither couple shared this with us after my husband's stroke because they thought we had enough to worry about and so we all drifted apart, struggling with our own issues. I am so happy I didn't let the resentment I felt over my erroneous assumption as to why they we'ren't coming around keep me from inviting  them to that party. Now, we all talk on the phone again and that's great. It's easy when we feel overwhelmed with our lives to forget that other people have troubles and crisises of their own to deal with. 

 

For us, the permanent answer to being overwhelmed with too much work was to downsize and move to a house that was easier to keep up than what we were dealing with in the pre-stroke. That's not to say I still wouldn't appreciate it if someone offered to spend some time with my husband once in awhile to do guy things. He really misses that.

Our Stroke Story

Caregiving really isn't for sissies.....is it ? I think there are some very valid points stated in both the above posts.........written by people who have been living it. I for one, will think carefully and thoughtfully the next time I offer any kind of assistance........after a crisis of some sort..............something really needed I hope.......no matter how small it may seem Thanks for the ideas............Peace and love........Norma

 Jean,  Yes, caregiving can sometimes get you down, especially when you feel you are living it alone.  Human nature gathers us when something happens to someone we care about, but that same human nature lets us drift away when we feel we are no longer needed.  I am disabled but have been caring for my husband who was just released from Homecare lastThursday.  Now I am no longer sure just how much he needs me to do or wants me to do.  Sometimes it leads to arguments. Like today.  So, if we can go at each other that way, how much easier is it for family and friends to not really know what we need or want to still be done?  I, like nanal, will also think carefully when I offer in the future.  

Boy, you really made me think about how I say if you need anything just let me know. I should just go and do something I can do for someone in need like even washing dishes, do the laundry, dust. What ever I am able to do at the time. Of course, it would have to be one of my good days also. I think it is a really good idea to write it down and let people pick when they say that they want to help. Take Care Now and a BIG WELCOME to DISABOOM!!!!!!!!!!!! Sandy