Being a Caregiver

This forum was created for those with an incredibly hard task: taking care of someone they love who is ill.

Being a Caregiver

Postby Catherine Poole » Sun Dec 13, 2015 7:49 am

I have sometimes thought of myself as being a caregiver to the MIF family and this was pointed out to me by a long time patient and friend here. So I hesitate to burden you with my own situation. But I am coming to grips with my family member's diagnosis of a neurological disorder that has no treatment. First we cried. And that is a good release and we've probably only touched on the amount of tears we have to shed. Then we deal with it. We read that physical exercise is helpful so we are ramping that up. My husband is a very fit person to begin with. Next comes the yoga and mindful meditation for both of us (and I am also pushing up my exercise) Then we truly make the list of the things we have put off doing. Long term care insurance is highly recommended no matter your health status. And where there is little family support, reaching out to your community. My work is my "happy" place although it can bring sadness. I will be here.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Being a Caregiver

Postby jeffb » Mon Dec 14, 2015 10:45 am

Catherine:

I'm so sorry to hear about your husband's condition.

You have been a caretaker for hundreds here and what a caretaker you are(!).

Your husband is in great hands.

Please keep us updated.

Jeff
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Re: Being a Caregiver

Postby Catherine Poole » Mon Dec 14, 2015 5:10 pm

Thanks Jeff, I appreciate it. You were a terrific caregiver and I'm sure I will need your advice. We are dealing with Lewy Dementia, Robin Williams dealt with this. It is a terrible disease without many options. Of course seeking expert guidance but also accepting reality. I will still be very active here of course and in my many plans to help patients be armed with good information.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Being a Caregiver

Postby jawillett@comcast.net » Mon Dec 14, 2015 7:58 pm

Catherine, I am so sorry to hear about this news for you and your family. I am sure you will invariably use the tools you have offered to us in the care for your husband...gathering information, gleaning the best medical advice, meditation, taking care of yourself too, reaching out...I am so glad your husband has you by his side. God Bless.
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Re: Being a Caregiver

Postby marta010 » Tue Dec 15, 2015 8:11 am

Catherine - I am truly sorry to hear of your husband's diagnosis. Sending many prayers to you and your loved ones as you travel this path. Even with your tireless caretaking of this community, it's a different level of care when it's a family member. Take care.

Ann
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Re: Being a Caregiver

Postby Catherine Poole » Tue Dec 15, 2015 2:47 pm

Yes, it is different being so close to my heart as it deepens my compassion for all of you. I did find a tiny clinical trial and it was promising yet in Phase I. I will still be going after the drug they used it. Also, found an expert we may travel to when our insurance is settled. Knowing and feeling all of the issues you have all faced in this frustrating medical world at a time you least need the hassle!
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
Posts: 10782
Joined: Wed Jan 02, 2008 12:09 am

Re: Being a Caregiver

Postby msue5 » Tue Dec 15, 2015 11:46 pm

Catherine I am so sorry about your husbands diagnosis. I think the caregiver role is so difficult. I can see how it takes a toll on my husband. As a caregiver you must be strong even though you are going through your own form of grief. I am forever grateful to my husband for always being there for me and dealing with drains, dressings, grocery shopping, cooking, cleaning etc. But I wonder who can he turn to when he needs support? My husband always goes to our support group for Melanoma with me and last meeting I was not up to going and he went without me. I hope you have someone to lean on when things get tough. I also hope you can find a forum as fine as the one you have created for us.
Mary Sue
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Re: Being a Caregiver

Postby Catherine Poole » Wed Dec 16, 2015 7:30 am

Mary Sue,
You are so fortunate to have each other. I was so happy to meet you both last year too. Your words have touched me deeply. I do feel like I have many to lean on including my MIF family. And don't think I haven't thought of starting something for this disease of his because I am already finding out there is more to know than what our neurologist tells us!
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
Posts: 10782
Joined: Wed Jan 02, 2008 12:09 am

Re: Being a Caregiver

Postby msue5 » Wed Dec 16, 2015 11:11 pm

Thanks Catherine. Just remember as you always say "take care of yourself too".
Mary Sue
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