caregiver burnout/anxiety/fear- mom with MS

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

caregiver burnout/anxiety/fear- mom with MS

Postby leesuh » Tue Apr 12, 2016 10:13 am

background- my mom was diagnosed in 1970. she's had 21 hospitalizations (aspiration pneumonia, mrsa, sepsis, UTi, etc) since october 2013. my dad is her primary caregiver. i am the only child, and live in the same town as them, and have 2 elementary aged children that i homeschool. she has an active lesion on her hypothalamus (suspected- only can be confirmed w autopsy, and just discussed with her neuro last week) that causes chronic hypothermia with delirium, which leads to hospitalization to raise her core temp, monitor respiration, give O2, etc. these hospitalizations have been about once a month. she comes home, pretty close to herself, then declines a couple weeks later. i'm burned out. i feel the pressure of constantly being at my parents house, helping, providing respite (they have home health, i mean emotional respite) and letting her see her grandkids as much as possible. i feel guilty for not doing more, guilty for not being as "present" with my own family (who are completely supportive and amazing). oh and it's totally me- my parents don't guilt me, etc. i have a great support system, family, friends, church, etc. these hospitalizations are just taking so much out of everyone- i live in constant anticipation and anxiety about her state, the next hospitalization, when she'll once again start to show signs and be taken in yet again. she's said she's not ready for hospice. has anyone "been there" with this, with a parent? with the sandwich generation taking care of their parent and own children? or have tips about how to enjoy without anxiety or constantly being on high alert for that next hospital visit?
leesuh
Newbie
 
Posts: 3
Joined: Tue Aug 11, 2015 11:49 am

Advertisement

Re: caregiver burnout/anxiety/fear- mom with MS

Postby lyndacarol » Tue Apr 12, 2016 1:25 pm

leesuh wrote:background- my mom was diagnosed in 1970. she's had 21 hospitalizations (aspiration pneumonia, mrsa, sepsis, UTi, etc) since october 2013. my dad is her primary caregiver. i am the only child, and live in the same town as them, and have 2 elementary aged children that i homeschool. she has an active lesion on her hypothalamus (suspected- only can be confirmed w autopsy, and just discussed with her neuro last week) that causes chronic hypothermia with delirium, which leads to hospitalization to raise her core temp, monitor respiration, give O2, etc. these hospitalizations have been about once a month. she comes home, pretty close to herself, then declines a couple weeks later. i'm burned out. i feel the pressure of constantly being at my parents house, helping, providing respite (they have home health, i mean emotional respite) and letting her see her grandkids as much as possible. i feel guilty for not doing more, guilty for not being as "present" with my own family (who are completely supportive and amazing). oh and it's totally me- my parents don't guilt me, etc. i have a great support system, family, friends, church, etc. these hospitalizations are just taking so much out of everyone- i live in constant anticipation and anxiety about her state, the next hospitalization, when she'll once again start to show signs and be taken in yet again. she's said she's not ready for hospice. has anyone "been there" with this, with a parent? with the sandwich generation taking care of their parent and own children? or have tips about how to enjoy without anxiety or constantly being on high alert for that next hospital visit?
My heart goes out to you, leesuh.

I have not been in your situation exactly – my mother-in-law had Alzheimer's; my father-in-law was primary caregiver; my husband has 2 sisters. It goes without saying that your mother would not want her condition to be taking such a toll on you and the family. I expect that she would want you to do your best, but that you would know your limits and stop when you reach the limits – she understands the responsibilities of having children.

We also had a great support group; nevertheless, it is hard to ask for and receive help when it's needed; we human beings think that we can always be the ones to give help. I can only urge you to call on those people who want to help – you would be giving them the opportunity to feel needed and blessed. You are giving a gift to your children, as well: a chance to learn compassion and understanding of the human condition. I think they will have a better chance to grow up into the caring human beings that all parents want.

My observation from your description of your mother's situation is that she seems to have frequent hospitalizations and infections (21 since October 2013!) After watching the following very short video, I wonder if she has had a vitamin D test:
Dr. John Cannell on vitamin D (6 min.)
https://www.youtube.com/watch?v=--NqqB2nhBE

The body makes hundreds of naturally occurring antibiotics called antimicrobial peptides. Professor Robert White of McGill University discovered that Vitamin D upregulates antimicrobial peptides, which have a broad spectrum of action against both bacteria and viruses.

Vitamin D has even improved gingivitis, periodontal disease; it has anti-inflammatory properties.

If your mother is tested and found to be deficient in vitamin D, her doctor may be able to give her high doses of D that would help her infections and reduce the number of hospitalizations. It is covered by Medicare. In my opinion, it would be worth investigating.
User avatar
lyndacarol
Family Elder
 
Posts: 3251
Joined: Thu Dec 22, 2005 3:00 pm


Return to General Discussion

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service


cron