If you are or were a family caregiver, what was the thing that stressed you out most?

[EllenR632153]

The most stress I think was from health issues, all or most of which came out of left field, so to speak. For example, Mom contracted whooping cough. Whooping cough? She had had it as a child and told me she remembered a family member telling her to go out and sit on the porch and cough because it annoyed that person so much (it was her grandmother! Suffice it to say, she didn't have a happy childhood). I write about how I dealt with these stresses in my humorous how-to book, Why is Grandma Naked? Caring for Your Aging Parent, which just came out yesterday,

[BrendaI912467]

It has been 12 years since my son passed away from Huntington's disease; which he inherited from his father.  Long story short neither of us knew at the time of a family history.  Dad was placed when my son was 9 months old.  My son was diagnosed at 5 and as a single mom I worked to keep him home  until he passed at age 18.  Doctors did not believe he would live past age 10.  My biggest stress was no help.  The system failed my family due to HD being rare and not being known ; especially to SSDI.  For an adult , yes, but for  a kid no way!  Big story of both kid and adult with this adventure, but way too long to dive into.  System failures are the biggest stress to families the affected victim and the caregiver.  The doors slammed in your face, the denials to services you know you are entitled to receive.  The beauracratic malarky.  Forgive my spelling, for I have serious disease now myself within last 7 years and no i have no help as well.  My illness; which the government created is not covered under SSDI.  Health issues will come out of the stress caregivers are faced with in caring for loved ones no matter how you examine all the evidence.  I still to this day do not regret one bit of my decision of what I did to keep my son at home.  I do not believe in facilities or nursing homes for my own reasons.  I think that too is alot of stress on caregivers as well.  For the year 2022 we are so backwoods with caregiving and caring for elderly, disabled, veterans, and less unfortunate it makes me sick.

[ChloeF35006]

My parents are in their 80s and have been married (unhappily) for 56 years. They never had much in common and would have divorced if they hadn't had children, but that's the way it is. Throughout my childhood, my family life was characterized by their squabbles, which was not ideal.

My parents both have medical issues. Dad suffers from dementia and is an alcoholic. He also has difficulty walking. Mum can walk well, but she is terribly lethargic, and she has given up on life in the last 5 years. I've been doing all of their home shopping and making sure their bills are paid for the past two years.Money is one issue they don't have to deal with, which makes me happy.

Dad's alcoholism used to be a major issue; he drank a bottle of whisky every day, which aggravated his other issues.  He had bathroom accidents on occasion, and we had to take his mobility scooter away from him a few months ago because he couldn't drive it home owing to being intoxicated and passing out on it in the pub car park.  When they summoned an ambulance and the cops got involved, I knew the buggy had to go.  I'd wanted to take it away from him for a long time, but my Dad is obstinate and independent, so I needed a lever to persuade him.  The mention of the cops emphasized the point. 

Anyway, I've been able to wean him off whisky and onto beer since then (4 cans a day).  This has greatly reduced his anxiety, and he has not had any toilet accidents since the start of this new phase.Meanwhile, my mother sits in the corner, doing nothing to assist him or herself. She rarely eats and prefers to sleep in her chair rather than go to bed. She stopped taking baths a long time ago, and I'm not even sure she washes properly anymore. She will wash her hair if I force her (which I do when it becomes dirty, but I don't like nagging her about hygiene issues all the time).  She hardly ever changes her clothes, and I doubt she even combs her hair between washes. She is now subsisting on milkshakes, tea, sweets, and chocolate.  When I try to convince her to eat something else, she usually ends up in the bathroom, sick. She will sometimes declare that the mere sight of food makes her sick, and her favorite saying these days is: "Don't bring me any food - I'll be SICK!"

I sometimes drive away feeling quite sad for both of my parents and the difficult time they are having in their old age. At times, I just feel terrible for myself because I've started to feel like their underpaid slave, and I can't help but detest it. I also feel guilty the most of the time.

On the good side, we've hired a nice lady as a cleaner/caregiver, but she's semi-retired and only comes in three times a week. I'd like to extend her hours/visits if I could, but she has her own family commitments, so that's not going to happen.

[HopeW816628]

You are quite amazing! 

My Husband has Dementia . Of course he says he does not!

I guess the hardest thing for me is when he Obsesses over something. 

God's Peace and Rainbows to you! 

[HopeW816628]

I am a caregiver for my husband, who has Dementia .I have been caring for him since last July, when he got Shingles. What stressed me the most was that he wouldn't let me help, He was very rude, and would not eat. 

The only things that gave me peace of mind, were my family, and knowing that he was acting like his dear Mother had; when I took care of her, with Alzheimer's.

[BrendaI912467]

Caregiving is a full-time job with no vacations, weekends, holidays, guarantee of sleep through 1 night or more and financial hardship.  I feel all 0f us caregivers experience these events.  The biggest stress for me out of the 14 years of caregiving i did in addition to working full time was the system being stupid and deaf and blind.  Society has no ideas on how to help disabled, terminally ill, and caregivers who are trying to provide a quality of life, and assurance that there loved one is well taken care of remaining at home.  All the burecratic BS is stress caregivers don't need on top of a demanding job.  The school not wanting to take care of there cost and the state just as negligent in not wanting to do their part.  So, families are the ones who are accountable all the way due to these other fools not wanting to do what they should be doing.

[GailL1]

@BrendaI912467 

What do you feel was lacking by these outside entities - what kind of help did you need that they couldn't or did not provide.

My overriding stresser was that yes, it was very tiring, but more than that it was that we (my husband and I) could not change the outcome - his death. 

[BrendaI912467]

Gail, I can only speak about my own personal experience.  Essentially, my situation was very frustrating not with my son's illness, needs, etc, but more from the system that never provided for his needs.  My son inherited a genetic disease from his father that we found out about the potential of it being inherited when i was 4 months pregnant.  At 31 i was a single parent needing to work full time to provide for the needs of my child with a progressive disease that was fatal in the long run.  Because my son's disease was rare he did not fit into that fine cut out slot that the state uses to determine criteria for eligibility for medicaid, ssdi, and more.  I worked to keep him home where i could manage his care and well being because i knew there were no placements carved out for him or his needs.  So, school did not have adequate instruction for him or the curriculum he needed, a para professional could not manage his needs for he was medical and guess what if the school can't find a nurse he doesn't get one so i paid to have that for a period of time and then there is more.  Trust me i have all the documentation from here to jericho.  The state well that is the biggest joke of all time.  We employ all these fancy titles to postions but they don't do squat.  In fact, i was also my son's case manager so i knew who was doing what and more.  I updated all parties and my son had 26 different medical providers.  You really have to investigate and do homework when you visit placements no matter what age to ensure that your loved one is going to be able to get the provisions as stated.  Be aware that many places have tours arranged and groups running with upteen employees that are not there when the tour is not scheduled.  There is so  much to be spoken about in regards to these matters, but i can't do it for long periods of time due to my threshhold being weakened and frustrated when i visit these events.  Every caregiver has a different experience depending on age, disease, illness, family support, etc.