swilkinson Posted March 28, 2006 Share Posted March 28, 2006 I am feeling really tired again. That seems to come and go for me. I have been looking after Ray for close to seven years now as his anniversary of the first of his two major strokes is 19th Aprill. We have just been to another Stroke Education group. The PT, OT, ST and nurse take the survivors through their paces for three hour sessions once a week for six weeks. There "should" be signs of improvement apparently. The social worker is there for the caregivers to ask questions , find resources, put in touch with support services etc. Instead it was "have you tried, and maybe you could". Words, words, words, words, words. The whole truth is that the services just aren't out there. Our Federal Government has a lot of priorities and services for caregivers are just not among them. Maybe I am getting the equivalent of the "seven year itch" and the long term affects of caregiving are taking a toll that no-one in the short term caring field has yet measured. Some of you have been long term caregivers like me so if you have some thoughts on how to combat the feeling that this will last for eternity and things will never get better, let me know. Sue. Link to comment Share on other sites More sharing options...
MargaretMary Posted March 28, 2006 Share Posted March 28, 2006 Oh Sue, I understand. There are times I wonder just what the heck am I doing? Caregiving is the hardest job there is, just no getting around that. You are doing a wonderful job ! My thoughts and prayers are with you. Margaret Link to comment Share on other sites More sharing options...
door60 Posted March 28, 2006 Share Posted March 28, 2006 I am with the two of you. I am so mentally and physically tired from caregiving. My mother and I are very different. We handle things differently, and I just can't make decisions on her behalf anymore, because she doesn't listen, and it's exhausting. I would very much like it if the governemnt built assisted living facilites that were actually reasonable in price. My mother is not nursing home material, but she can't quite manage on her own. Living with me is not good for either of us, and I am just so stressed, I feel as though I'm breaking down! Dorrie Link to comment Share on other sites More sharing options...
mikisteph Posted March 28, 2006 Share Posted March 28, 2006 . The big thing in the UK at the moment is children who are carers. i had a brainstem stroke three years ago and am wheelchair bound. I try not to put any strain on my two teenage daughters but still there are things they have to do because i cannot Whilst there is a carers allowance the girls are not old enough to receive it and even then there are so many restrictions and forms to fill it is not worth having One day carers will get their just rewards but i doubt it will be in this life mike Link to comment Share on other sites More sharing options...
kristina38 Posted March 28, 2006 Share Posted March 28, 2006 Not sure if I qualify as "long term" but I've been caring for my Mom full time for nine months and she was in the hospital, acute rehab for five months prior to that. Some days are just unbearable and I really want to quit and some days are great and it makes it all worth it...I'm still unable to work outside the home as it is just not cost effective to have to hire someone to watch her while I work but the financial situation is getting to the point where I will have to make some kind of move soon *sigh* I was a bartender so I will probably work nights when and if I can return to work as Mom needs the least amount of care at night. Of course that leaves me NO time to sleep if I work nights and then care for her during the day so who knows what I'll do. My fiance is working two jobs most of the time to try and help out but that leaves me even more exhausted because he's not home to help me with Mom as much...Thankfully, she is getting better and now goes to outpatient therapy three days a week for about seven hours! This at least gives me time for errands and occassionally a NAP...lol It would be nice if caregivers were treated better by government agencies but I don't see it happening anytime soon even though we save THEM millions of dollars by caring for our loved ones at home instead of putting them in the system...Not fair, but life rarely is. Kristina Link to comment Share on other sites More sharing options...
fking Posted March 28, 2006 Share Posted March 28, 2006 Sue, excuse me for jumping in. I am not a long term caregiver as you know. but I have so much love in my heart for you and all the other caregivers, long or those just beginning the journey. My praise is unlimited and some of my post has expressed that concern. I just want to say from what my wife has gone thru and what she had to give up, I know how hard caregiving can be full time. In my faith, I continue to pray and ask that some day a system will be in place to bring relief to caregivers across the planet earth. Just a simple home care system employing people and paid thru insurances and perhaps Government assisted would allow for caregiving help or relief. Meanwhile, I'm hoping you can find a solution to free you up and give you a much needed break. I can imagine the stress upon you from observing my wife. I'm so glad my progress and condition has allowed her to get some much needed rest from caring for me during my two years of recovery so far. I wish my love and concern was a solution in your case. Link to comment Share on other sites More sharing options...
Guest HostLinda Posted March 28, 2006 Share Posted March 28, 2006 Sue, You are right about a few things, c/g is one of the hardest jobs out here..We can not get any help due to our ages. Mike is(53) but 47 when he became ill. I am(48) was 43 when this all started.. You see this Aug 2006 we will find out if Mike has had a stroke. This road has been a long road. Mike has been ill for 5yrs now.. Last January 2005 Mike was diagnosied with Gluten Ataxia.. This disease is in the family of Celiac disease.. Mike can never eat wheat,rye,barley,oats,malt ever again.. We know so far it has done damage to Mikes brain.. We wait for the MRI in Aug to see if there is any more changes in his brain.. His neuro dr thinks(strongly)that he DID have a stroke 5 yrs ago.. So yes c/g can and will be a very hard job.. Sue,keep comeing here and to chat for support.. God Bless you my friend.... HostLinda Link to comment Share on other sites More sharing options...
nyally Posted March 29, 2006 Share Posted March 29, 2006 Sue, I truly do not know how you have done this for seven years. When my boyfriend had a stroke only three months ago, all his friends walked around me on eggshells, patting me on the back, being all grateful for my being at the hospital every single day. Finally one of them admitted that they all worried that I would walk away. Some women would. Well, we have a house together, have lived together for a while and I can't imagine just throwing in the towel...but on the other hand, I am not sure I could go at this pace for SEVEN years. We are very lucky, he has had a lot of initial return of functioning and I can see that he will get better and even if he never goes beyond this point, he will have quality of life and I am grateful. But will I be saying that in seven years if we are still fighting for more therapy time? (He has already maxxed that out and I am battling the insurance co) I hope you take some of the advice offered here and get yourself out of the house. I called my boyfriend's buddies to come over this weekend so I can get out of the house. They were so glad I finally asked for help. Should have done that a few weeks ago... Link to comment Share on other sites More sharing options...
bstockman Posted March 29, 2006 Share Posted March 29, 2006 Sue you and the other caregivers are Priceless... but you are not the everyready bunny.... I know caregiving is hard (been there too) it is hard to find someon you can trust to leave your loved one with so if you do get time you rush around trying to get things done as fast as you can and get home. As you meet new people in your new church, maybe someone there will connect with Ray and be able to sit with him.... I'm sending you halo and one for every caregiver here Bonnie Link to comment Share on other sites More sharing options...
Guest Brenda65 Posted April 5, 2006 Share Posted April 5, 2006 You are all truly amazing people. I helped my Mom take care of my Dad for 18 months battling leukemia until he passed away. Now 4 years later, I am taking care of Mom after her massive stroke, which no one said that she would survive. She is now eating, talking and walking with assistance. She has only been home from the hospital for 2 weeks. This has been life changing for my husband and 2 small children. I have my sister that I can rely on to help whenever she is not working, she will assist in every way. But we are realistic. Mom will never be able to be left alone. She will need 24hr supervision for assistance with ADLs. We just take it day by day. Sometimes she gets mad at us because we do PT/OT exercises with her, but sometimes she amazes us by doing those exercises on her own. Thanks for all your points of view-you are all inspiring and special people. Brenda Link to comment Share on other sites More sharing options...
kristina38 Posted April 5, 2006 Share Posted April 5, 2006 Brenda, our stories seem to be so close to the same...My Dad battled MDS (bone cancer) for three years, Mom did most of his caregiving I came down here about every two months to try and ease her load then she had a massive stroke not quite three years after he passed away. I can empathize with you, it's hard enough losing a parent but then to have another parent struck down so soon afterwards by a stroke is just traumatic, or was to me. I don't think I've really grieved any of my losses yet because I've just not had any time to myself. Good Luck and know that it does get easier Kristina Link to comment Share on other sites More sharing options...
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