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Post by Deceived Wife on Feb 28, 2014 23:34:30 GMT
I don't feel my husband gets much support from his medical team, both the liver specialist nor the primary and definetly there is no support for the family. Example, I learned that summer of 2012 he was being treated for HE and I was never informed by anyone.... I saw the signs of the lactulose, but was told he was lactose intolerant. I saw the slurring but thought it was the booze..... I saw the mood changes and aggression, but that's him and and felt it odd that he was set off for no reason. He was just angry all the time for no apparent reason.
I think the lack of support has finally changed. I knew the medical staff wouldn't talk me and god knows who Dr Feel Good is....
So, today I walked right into the VA asked who his social worker was and told them I needed some help. Within 5 minutes she came to get me and we talked for 45 minutes or so. She gave me her card to call her at anytime.... I let her know of all the strange HE behaviors lately..... that my cardiologist thought he had maybe a few more months at best.... given what I told him ( My cardio was his attending cardio when he suffered his heart attack after the GI bleed).... and he always asks me how hubby is doing.
Anyway, the social worker will tell hubby's VA doc all that I've said..... and they will call him in for an appointment and are going to evaluate for pallative care. The social worker felt with what I was saying, his time is limited and the pallative care team can help make him more comfortable. They also have a caregiver support team who will check in with me. I left feeling like I was no longer alone.
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Post by Onomatopoeia on Mar 1, 2014 0:12:02 GMT
Cool beans about the palliative care and the caregiver support group!!
I think the medical world kind of has a really cold shoulder for drinkers. I saw a clear change in his treatment when I told his doctors he was drinking. They might as well have turned on the disco lights and the Neon Exit sign with the chaser lights pointing to the graveyard.
Palliative care is helpful no matter what the diagnosis.
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moon head
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Post by moon head on Mar 1, 2014 1:05:50 GMT
I find it very difficult to understand anyone who continues to drink knowing that drinking will cause their demise. My husband was diagnosed with Hep C in 1992 - the day he was diagnosed - he never had another drink (except for a toast at our daugther's wedding in 2005). If you are looking for support - I would check out Alanon - surely there are hospice support groups as well.
As for the VA - here in Atlanta - it sucks!
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Post by Onomatopoeia on Mar 1, 2014 1:31:38 GMT
I'm not sure, but isn't alanon full of people with mostly social and.legal issues? Both that and this may be helpful. She has a self destructive patient.
Joe was given the green light for beer today since his time is limited and recovery is very unlikely. He turned it down. He's afraid of bleeding in again or sever pain from further liver damage.
But even if they quit drinking A A and other support groups are still necessary since the psychological coping doesn't change just because they laid down the bottle. A Dry Drunk is still exhibiting poor.life choices and need to develop new skills. Transplant or not, alcoholism is a very dangerous and hurtful disease.
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Post by Deceived Wife on Mar 1, 2014 3:01:15 GMT
I find it very difficult to understand anyone who continues to drink knowing that drinking will cause their demise. My husband was diagnosed with Hep C in 1992 - the day he was diagnosed - he never had another drink (except for a toast at our daugther's wedding in 2005). If you are looking for support - I would check out Alanon - surely there are hospice support groups as well. As for the VA - here in Atlanta - it sucks! I don't think alanon is the place for me. My husband has ESLD and is actively dying before my eyes. I need support in dealing with the issues of ESLD. My husband is NOT going to make it to a transplant list, nor does he want to be on one. We've had nothing but positive interactions with our local VA. The approval process took just 2 days. We still have Personal Choice and so those are the doc's my husband typically sees, but he is also a patient with the VA. No one else yet has mentioned pallative care or hospice care to us, only the VA. His regular docs.... just seem to bandaid the issues and even he himself has said he knows he is not a priority to them. Yet, I show up at the VA unannounced asking for help and out comes his social worker who gives me almost an hour of her time, information, will have his VA doc call him in for a check -in and a much needed hug. I left feeling heard and valued as his wife. I'm sorry your VA sucks and I hope I never have to say that about ours. Thus far, they have been wonderful for the few times we have utilized their services. |
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Post by Onomatopoeia on Mar 1, 2014 4:34:52 GMT
You're right. Alanon is not for you. I got sidetracked. You need caregiver support for your dying husband. This isn't a tp forum. It's a forum for care givers of someone with esld.
I am thrilled you found help. I'm happy you found a valuable resource. I took my grandfather to the VA and found them to be very loving and kind.
Congradulations, dear!
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Post by Deceived Wife on Mar 1, 2014 5:25:56 GMT
Thank you!!! I'm going to take whatever help the VA can provide, even if my husband won't. I will partake in the caregiver support group and I will reach out to them when I feel intervention is needed. His regular doc's, I won't give a 2nd thought to at this time. VA all the way!!
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moon head
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Post by moon head on Mar 1, 2014 17:09:33 GMT
I am a caregiver - my husband is not well. My husband began with Hep C, liver cancer, mucormycosis (rare lung disease), diabetes, a heart attack, triple bypass surgery, a stroke and soon surgery on his carotid artery. We faced ESLD and most likely (once Hep C hits his liver again) will be faced with ESLD AGAIN! Although my husband received a transplant - he was terminal for close to one year.
This is a forum!
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moon head
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Post by moon head on Mar 1, 2014 17:12:17 GMT
FYI - sometimes ESLD ends with transplant!
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Post by Deceived Wife on Mar 1, 2014 19:16:32 GMT
FYI - sometimes ESLD ends with transplant! Thank you. I am aware of that, however, as I have stated, mine does not want one; so in this case.... It will not end in transplant. I believe Ono's spouse has said the same. |
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Post by maybee on Mar 1, 2014 20:08:35 GMT
I'm glad you've found help, DW. I pray the best for you.
My brother keeps losing things and thinks he is going crazy. He began crying a lot he must be afraid. Consoling doesn't seem to help. There is a movie at hesback.com which doesn't help him much but I felt better knowing what may be coming.
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