Do you feel unsupported as a caregiver?


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As most of you know I am a widow, my dear husband Ray died in 2012 but I still have contact through my old Stroke Recovery group with others, both men and women, who are still looking after a stroke survivor and I give them what support I can whenever we met up.  I know in my life as a caregiver I often felt unsupported and know that people who are new to being a caregiver or even those who have been one for some time may find the same.  I thought I would start this discussion topic here so you have a chance to share that feeling with other caregivers.

 

Sue.

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  • 1 year later...

I am sorry that you've had no response.  I have huge admiration for anyone who is able to cope with caring for someone with stoke.

 

I am sure that there are many caregivers out there who can use support, just do not know where to look.

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Paul I still belong here for that reason. As the Blog Moderator I can be an encourager to survivors and caregivers so that no-one goes unsupported. As a former caregiver and with 13 years as the support for Ray I know both sides of the story.

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Sue your comment brings my stepmom to mind. Daddy finally was taken off of life support today. It's been a hard day for everyone I know in my Dad's family and other friends and acquaintances. My stepmom has challenges herself mentally and physically. She has been a caregiver for so very long. First for her mom...who passed last year at 97. She moved in with her mom 7 years before her passing. My dad was not sick then and he encouraged Janice to go to her mom. Janice came to her and my dad's house maybe once or twice a week. They spoke by phone often. Her brother lives in Oklahoma so Janice was essentially her moms only caretaker. She did so with love and happiness. She never has been able to process her mom's passing because she finally moved back to her house with my dad and almost right away he was diagnosed with lung cancer. Though I lived with them I wasn't my dad's direct caretaker...he wanted Janice to fulfill that and with an open heart of course she did. We have had many talks, disagreements, understandings...i know she felt very alone. She on many occasions said "I do it all.". It wore on her like a heavy wet blanket. My sister and I both have tried to be encouraging during this really hard time. It is time that she focus on and take care of herself now. To feel OK that someone takes care of her. I have seen the long, hard, lonely, debilitating and hollow price. For her it has been a huge price. I try and tell her how much I love her and thank you for all she does. My love and prayers are with her. 

 

I also think of my daughter who was my caregiver after my stroke 4 years ago. She had already gone through so much and she was thriving. Full time college and full time job and on July 5th 2015 full time caretaker (she was 19). I am so heart broken how much doing so took from her and I wish so much that she had never found her life placed in those circumstances. How inconvenient is a stroke! Without her I don't know if I would be here today. She sacrificed everything to take care of me. Her mental health took a big blow. After time, she no longer could be my caretaker...or work or function at her prior stability. She quit school. She moved out and got into a very unhealthy relationship. Support for her was absolutely lacking. I was too ill, my ex was no support period, and I know she also felt very alone. 

 

I thank God for them both. I am in awe at their selflessness at the moment. Such a heavy price. Sue you are so beautiful. Such a true blessing for others like yourself. Thank you for all you have done and all you do. 

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Tracy, no-one forces us to be caregivers, we do it out of love or a sense of duty. Your Stepmom and your daughter both did it out of love. I believe there is a sense in which those who give such love get it back, maybe not immediately but eventually. I have found that in the past three years as I have struggled with three serious operations I have been surrounded by people who want to pay me back, not for what I have done for them but for what they have seen me do for Ray. So keep praising your Stepmom and stand by her as you both begin your bereavement journey. (((hugs))).

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I do try to always make sure my wife understands that I truly believe and know I would never be where I am 4 1/2 years later without her. Also that I know I'm not the only one in this marriage who's life has been drastically altered and she has fully accepted that. Lucky me and I do not and will not ever take that for granted. ("not" the only one) edited but boy did I leave out a key word. Stroke brain lol.

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>  no-one forces us to be caregivers, we do it out of love or a sense of duty.

 

I have an enormous admiration for anyone supporting family or friends with a chronic illness, _especially_ anything that affects their brain (stroke, demote, depression, senile decay), and _especially_ over the long term.  It shows a level of love and caring that goes far beyond what anyone could reasonably expect.

 

Nonetheless, I still feel guilty about the additional burdens that _my_ injury places on _her_.  I'm also very aware of the impact that my loss of earnings has on our finances and our previous plans.  

 

This is not to negate your point in any way.  Just emotions are not always rational.  I was raised in a Calvinist household, so we were all taught to feel guilty from an early age.  We were also taught that our role in life was to serve, not to be served, and that being ill was some sort of moral failing.  It's hard to shake that sort of stuff.

 

I'm afraid that this is a bit incoherent ...

 

 

 

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Sue I truly feel you are very right my friend. Some call it karma, circle of life, love...no matter it comes back to you. Beautiful souls choose to see through the rough stuff not to ignore it but because they know the rewards once past. You dear Sue are a beautiful soul. 

 

Paul, I don't feel what you say is incoherent at all. Sometimes life circumstances prepare us for what is likely ahead. Sometimes we just don't end up on the "likely" path. Not too much prepares us for those instances. It is very hard to shake what has been engrained in you your whole life. You just know something doesn't feel right. You learn how to navigate on rough waters. You learn that this world is not black and white. The gray is /has always been a force. May your path lead you to a positive light. You do serve others when you allow others to serve you when you need this. I don't see it as a moral failing but a righteous path. As hard as it is and I know it's hard, you can define you. (((HUGS))) 

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  • 1 month later...

Hi, Sue!

    I'm so sorry that you felt unsupported as a caregiver. Yes, it can be lonely at times, but we just have to remember that there are so many others out there going through the same. Sometimes it can be hard to reach out to others. I am not the type of person who likes to put my feelings out there, but sometimes we must step out of our comfort zone and do just that. Caregiving for a loved one is just too important a job to let our own self-care slide. Our loved ones depend on us, and it is the most important job we will ever do. Before my husband suffered his stroke, I've always wondered how caregivers managed to do what they do. Now I know that they do it out of love. 

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Sue, that is a great point. I learned while I was in counseling that many stroke survivors, I know i did, only see what stroke has done to themselves. I mean, yes , stroke changes us but we often fail to see how it effects the family.

I would see that my husband was going out, to work, as being able to do things. I then started to accuse him of doing things, outside the marriage, because I was so upset how I looks/felt. He  was having to do two jobs in one and you're right,, I, we, didn't appreciate what he did.. 

So from me.. thank you all caregivers who do an amazing job

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  • 1 year later...

Hi Sue

 

I’m not sure if you’re still commenting in this conversation but I read several of your notes to other people and felt like you were a good person for me to reach out to for some guidance and support.


My mom had a severe stroke almost 3 years ago which paralyzed her right side and left her unable to use language. She still sings a lot with us but is not able to communicate verbally anymore. Her stroke changed everything in our family and turned my world upside down. She stays in a small board and care facility now where she has 24 hour caregiving and I have tremendous guilt about her not being home with my family. I live one state away so when it happened, I stay with her 24 hours a day for two months and when things leveled out to a new normal, I returned home and started flying home every three weeks to visit. Just a couple months before she had the stroke, she told me she didn’t ever want me to move her in with me, I think she knew something was coming. I always imagined I would happily move her into my home and I have horrible guilt about not doing it, even though I know that level of caregiving would be so hard on my mental health. My dad had a heart attack shortly after her stroke So he has his own health concerns and doesn’t feel capable of being the primary person at home with her and I hold a lot of anger toward him because of that. In the meantime, I do everything in my power to bring her as much joy as possible. We used to go out on walks, shopping, to cafes every time I visited but, since we couldn’t do our regular visits during the quarantine last spring, she lost a lot of the energy she had gained back and my heart breaks now because she mostly sleeps all day and doesn’t want to get out of bed anymore. Her doctor shared that most people would have died from such a severe stroke, but I know my mom stayed for me. We are incredibly close and I’m so grateful I’ve been given this extra time with her, but I worry every day both about her dying and simultaneously afraid she’ll live like this for many more years, which I just don’t want for her either because she can’t enjoy life like this. 
 

Any guidance, wisdom, resources or support you can share would be very welcome.

 

Thanks

Laurel

 

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Yes, I do come back here from time to time. You have had a very difficult journey with your parents. I know how hard it is to put a parent into care. At one stage in 1999 I was looking after my husband who was at home after leaving hospital after four and a half months after two major strokes four weeks apart early in 1999. My father had cancer and fell and broke his arm, Mum with dementia could not care for him so I took them into my home.

 

Four months later my Dad died. I continued to care for Mum and Ray. But Mum was a runaway, always sensing as soon as I was busy that she could "escape". I had to put a lot of effort into getting home care for her, three half days a week towards the end of our time with us. Even so looking after Ray all day and Mum all night (she needed little sleep) left me with little time to sleep so after two years I put her into a dementia specific locked down Lodge at hostel level.

 

Even though I did it out of desperation, I simply couldn't keep looking after her and Ray,  my guilt level was high. How could I do that to my Mum? My doctor and friends told me I had to look after Ray as my first consideration.  The staff assured me I had done the right thing but the guilt haunted me. In the end I came to terms with what I had done. Her care was good and I visited whenever I could. I still bought her clothes, cosmetics, snacks etc and took her out to lunch every second Monday when Ray was at Daycare. She was in care for eleven years. No-one could have predicted her living that long with dementia and physical disabilities.

 

How I coped with my feelings of guilt and grief at her ever changing circumstances, falls, broken bones, colds, flu etc was to reassure myself that this was the best I could do. Other family members did little to help and often I was her only visitor for months on end. But the care was good as I said and the best we could manage.

 

Ironically my Mum outlived my husband by two months. They both died in 2012.

 

I hope you can come to terms with the decision to putting your Mum into care. You still have your Dad who needs supervision too and that will increase in the future. Make sure you look after yourself and keep healthy so you can give your attention to both parents as they need it. We are part of what was called the "sandwich generation" caught between looking after ageing parent and adult children who still needed our care and attention. My youngest son was only 15 when Ray had his first stroke. 

 

Just take a day at a time, read as much as you can about the ongoing treatment of stroke survivors. We have people on here who have had increasingly good results from physical therapy, speech therapy etc. Did you know that your Mum may be able to speak sentences in a sing song voice. If you do it she may get the idea. Keep looking into diversional therapy, it was great for my Mum with dementia, stimulation of various kinds helps too, participating in handcrafts, cooking, singing, tapping in time to music. A friend of my Mum's used to go into her nursing home and play the piano and she would sit beside her. Think of what made your Mum happy and see if you can bring any of that back into her life. The same with your Dad. And take time out to relax yourself. The carers life has to be worthwhile too.

 

Hope this has helped. I had a hard life as a caregiver but wouldn't trade any of it away. This site really helped me. I made some great friends here through posts, chats and blogs. That is the reason I am still here as Blog Moderator. It is my way of giving back.

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