Aging parents & your dysautonomia

[ddschool]

I’m curious how/if anyone has dealt with dysautonomia & aging parents? I’m an only child, and now having to navigate decisions with my aging parents. I can feel symptoms getting a little worse & getting a lot of anxiety because of my parents. My husband is taking the brunt of my frustrations, & I have to keep apologizing. 

Thanks for any advice.

[dancer65]

Yes I have been in this difficult situation it defiantly exasperated my POTS especially the anxiety,  addrellin and high heart rate , which at one point was 125 in bed at night for hours for weeks on end . I was a carer with my parent having signs of dementia that other family members would not believe .

I am no longer a carer but other issues are still going on and if I could turn back the clock I would do things very differently but hindsight is a great thing ! My advice would be to put yourself first along with your marriage , I didn't and I am lucky that I am only  paying the price with my health not my marriage however the decline in health  affects my husbands quality of life . I am extremely lucky my husband has been wonderful throughout the whole saga he is so unjudgemental ! This sounds very selfish but actually taking care of yourself needs to be priority IMO! 

 

 

[WinterSown]

My MIL is in her 90s.  She's fallen and she couldn't get up. She had hip surgeries and was in and out of the nursing home. Finally, we have a home aid for her seven days a week but it has been very expensive. She will likely run out of her money and benefits in another year or two. She's not well but she's done a good job of hanging in there. Kudos to her. We found it best to work with a lawyer to get her finances set up so she can have the aid. Honestly, I live in a small house and don't have room for her. My SIL frequently hosts her but it has been disruptive to the house with one of the kids giving up his bedroom and sleeping in the den so grandma can sleep in his room. Contact the local hospital or senior program of your county and talk to them about your concerns. They will know the local resources and programs that will help you as a caregiver. Good luck.

 

[bombsh3ll]

Is the difficulty with your parents needing care themselves or becoming less able to care for you? I can see how both are a worry. My dad is getting on in age and becoming increasingly forgetful, but is very physically fit and active. He stays with us for most of the week to help me at home and do things like taking my son to & from school. 

It sounds selfish but I worry about how I will manage when he is no longer able to do so much for me. I just hope that my children get to ages when they can do things for themselves and help me out as my condition progresses, before my dad becomes infirm. We're lucky to have space so he would never have to go into a home, and it is also much cheaper to get home care staff in if needed than a residential facility. I joke that between us we have one healthy body and one sharp mind (well it is when I am lying down!)

My husband is also amazing but he works full time. 

B x

[p8d]

I absolutely second talking to an elder care lawyer and talking to your county aging unit.  My father had Alzheimer’s before I developed full blown dys.  The stress was unbelievable so I also second taking care of yourself and marriage first.  I was my mother’s respite care giver for my dad one week a month.  Because he was a veteran he, and now my mother, qualified for assistance from the VA.  He had a home helper and my mom gets financial assistance.  There are organizations that can assist getting that information.  After full blown dys I can no longer assist with my mother who is now in assisted living.  My brother does just about everything.  Moving her into assisted living has been wonderful for everyone.  

[GasconAlex]

Huge issue for me this one! I'm not in too great shape and my parents live a long way away from me and my siblings. They both really need some care or at least home help  but refuse all offers of help or moving closer to one of the kids (I'm lucky in that I've got spare bedrooms, and a small annex available). They want to try to help me, which frankly is not going to be good for them, and will be stressful for me. I'm fairly certain that my mother has issues with dysautonomic dysfunction (but refuses testing) whilst dad has issues with hip replacements / epilepsy / Parkinson's / COPD / hypothyroidism / osteoporosis ++ (he's late 80's).

Although both still mentally OK (yes sometimes it's difficult with my dad, especially if they have restarted the morphine) but both of them refuse to make plans about how to live! (They have both sorted out the financial stuff and wills for when they die.) They live in a house that is not disabled accessible (or convertible) and say they have considered moving but cannot find anywhere in the locality. The fact that they are hundreds and hundreds of miles from family is rejected, even when they now have problems with the not infrequent hospital visits. Assisted housing is a complete non starter,  and it's really difficult trying to sort this out at long distance.

[Pistol]

I totally understand your dilemma. When my parents got to be of age to need help my siblings helped. I myself would not have been able to - I need my husband to do most things for me. If I did not have my brothers and sisters to take care of them I would have had to look for outside help. ANY type of stress can affect our symptoms and often we have to choose between what we can and cannot do. If you can not do for your parents what you think you should do ( or what others think you should do for them ) then you have to weigh what is more important: your health and family or their ( your parents ) wishes. You are not neglecting your parents if you are not able to care for them - there are many resources for seniors to get help. Remember - you cannot care for others if you cannot care for yourself. Decisions about the care of your parents often come dressed in guilt - but it does not have to be that way. Best wishes for you - and I hope your husband understands that this is a very stressful and taxing time. He should cut you some slack.