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Spouses and Caregivers The people who take care of the patient

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Old Tue Jan 29, 2019, 01:12 PM
JC62 JC62 is offline
Join Date: Jan 2019
Location: Michigan
Posts: 1
Is anyone out there?

I noticed that there has not been any postings on this section since November....is that correct? I'm a spouse /caregiver for my wife who was diagnosed with AA just over a year ago. Undgergoing the AGT treatment with mixed results. Transplant is last resort as no good match found yet. We're both in our late 50's - with 2 grown children both still finishing thier education - which I am funding and thats another story! Not the 'Empty Nest' life I was looking forward to for years. I do my best to keep my wifes spirits up, but I am beginning to struggle with my own attitude. I'm the sole breadwinner and still have to work full time with a VERY demanding stressful job that I hate. Everyone relies on me....and it's getting very heavy. My life and my needs are at the bottom of the list. Fun or happiness seems harder and harder to find. It seems everything we've worked for for 35 years is being snatched off the table. I guess I just need to vent a bit. Thats really my only outlet besides a run or workout in the basement.

Last edited by JC62 : Tue Jan 29, 2019 at 01:14 PM. Reason: want to delete
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Old Tue Jan 29, 2019, 05:42 PM
Sally C Sally C is offline
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 453
Dear JC62,
Although I didn't have a job when my husband was so sick, I do understand how you feel that everything is being piled on your shoulders. We were about a year and a half into his illness before someone asked me how I was doing - and I just started crying. Understandably it was about him but it was really about both of us - just as it is with your wife - and you.

I have been both caretaker and patient. I firmly believe it's harder being the caretaker. The patient gets taken care of but so often, the caretaker doesn't. We had no family within 1500 miles and with Don's immune system just about gone, they couldn't even come to help. Women are more prone to lean on friends and family for emotional support but I believe that's the best thing you can do for yourself. You'd be amazed at how much people want to help if they're just asked. Now is not the time to just man up - you need to reach out to family, friends and co-workers. I also hope you are a person of Faith as that is an always available resource for support.

I wish you and your wife all the best.
God Bless,

Last edited by Sally C : Tue Jan 29, 2019 at 08:26 PM.
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Old Tue Jan 29, 2019, 06:44 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,494

Sally is right.

I know what you're going through too, because it was the same for me: a wife with AA, minimal success with ATG, hoping she didn't need a transplant, kids in school, a full time job, etc. Stress from all sides, with no relief in site.

Seeking help wherever you can get it is more important than I realized at the time. I thought I could just take charge and manage everything myself, including learning all about AA so I'd understand the doctors and know how to help my wife day to day, plus managing the household, the bills, and the rest of the family. But I learned that nobody can keep up that pace month after month, and other people were willing to help if I just asked.

The disease is rare, but your circumstances aren't. Caregivers have a tough role that often isn't recognized, because everyone is focused on the patient.

It's really hard to get though days when things aren't going well, especially if you are trying to put on a brave face for everyone else's sake. I found that optimism helped. I hope that you can think of this as a temporary setback (or a low point) in life, and try to look forward to the time when things will get better. You may be burdened, but everyone is on your side.
Founder of Marrowforums and caregiver for my wife
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