Specific Situations > Extreme Caregiving

The impact of caregiving - Caregivers Anonymous

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Wheelerswife:
It looks like I keep coming back here today, so I might as well get off another post.

I was a long term extreme caregiver.  My first husband had a progressive genetic neurological disease.  I knew a lot about his disease before I met him.  I knew the prognosis and that he could face continued decline, respiratory illnesses and respiratory failure, and that death could come from any relatively mild illness that could easily escalate into dire circumstances.  But I met him...and he was charming and personable and full of life and determined to make lemonade out of the lemons he possessed.  We fell in love, decided to get married, bought a house, and my caregiving days began.

My husband never walked and he used a power wheelchair for mobility.  He was essentially dependent for everything that needed to happen until he was up and sitting in his chair.  We addressed those needs by finishing off an apartment in our basement and hiring a morning caregiver who lived downstairs rent-free.  I managed the much quicker evening routine and for the 18 years we were together, I woke every 2 hours or so at night to turn him when he woke up uncomfortable.  I generally did not get any nights away from him, save an occasional overnight when a friend would stay with him.

As the years passed and my husband's abilities declined, he gradually lost the ability to feed himself, drive his high tech adapted van (joystick controls) and an assortment of other fine motor tasks that had occupied him and given him satisfaction.  (He worked in computers.)  The less he could do, the more he was dependent on me for practical things like eating and transportation, but also for companionship.  He gradually became more emotionally dependent as well.  The last couple of years were the hardest, especially the last 16 months when his health was precarious, he had critical care hospitalizations, and he was ventilator dependent at night.

As his abilities declined, I let go of more and more of what I enjoyed doing.  I barely had time to read a few pages of a book before I had to put it down and help him with something.  He survived on a fine balance point and was frequently in need of assistance to keep his unstable ship on course.  When I wasn't at work, my life revolved around him.  It was like I had an adult infant.  Things continued to be rocky as far as his health was concerned, and eventually he suffered his final respiratory illness that led to his death.

So how does this long story relate to now?

Over the years we were together, I gradually gave up just about every past time that I had.  After he died, I had some time to grieve, and then I met my second husband.  We did all kinds of things together and there was always a lot of stimulation.  When my second husband died, I was in school and continued for three more years studying.  That kept me fairly occupied.  I finished school, closed up my house and now I am searching for a job in my new field.

But...I realize that I am just the most boring person on earth!  I have no real hobbies because I gave them all up starting 25 years ago.  I have no confidence to even try something new.  At least when I had my house, I could putter around and take care of some necessary chores, but I don't even have that now.  I know that if someone else came to me with this concern, I would probably be able to give them some suggestions to get started, but I can't seem to do that for myself, perhaps because I don't know if I would find the motivation to carry anything out.

My name is Maureen - and I am a caregiver.  Anyone else ant to join "Caregivers Anonymous?

tybec:
I am a caregiver.  I am as a professional, and I am in my life.  I prefer and like to be the one who helps others.  I want to be the one people  call, and I link them to services/people that can help them.  I like to give information, the person in the know of lots of health things.

I took care of my family, more than I realized.  My husband had some illnesses after being in Desert Storm, unexplainable.  He ended up having cancer, treatable, but rare, the 4th in his platoon to have it.  Post military, so no follow up. It impacted our ability to have children.  WE had a child with help, but I  still seemed to take care of his needs all the while trying to get pregnant with assistance.

My dad had Alzheimer's.  I was the one to help my mother with care, eventually choosing a nursing home facility, being present when he required inpatient care for aggressiveness due to his dementia.  I helped my mother wth all those steps of care until he passed and then her moving to my town, after she looked at my city and a brother's city to choose from.  I took care of her, my toddler son and husband while I worked full time taking care of kids with abuse/trauma issues as my job.

I didn't resent anything until my husband died.   I liked control and NOT being the one in need.  But the last almost 6 yrs. have been hard taking care of my mother with growing dementia, heart issues and being a widow with a now teen.

I have given a lot.  I tried to keep busy and do the things for stress I told other's to do.  I think I did alright but also would crash and burn privately.

I need to reinvent who I am.  I am working on it. But I resent having to do it, too. 

I am a caregiver.......

CJF:
I have been a caregiver for as long as I can remember.  My mom was paralyzed from a stroke when I was young so I grew up doing alot around the house that she could no longer do.  I still had a memorable childhood but I think my role as caregiver started back then.  As she and my dad have gotten older, I've taken on more and more.  When my grandfather (step) was getting up there in age and no longer able to take care of himself, he went into a nursing home and I was the only one who visited him weekly and took care of things regarding his care.  At the same time I was raising two kids and trying to keep my marriage together, while my husband resented the fact that I spent so much time caring for other people.  He died almost 7 years ago, my daughter is now married and my son is off at college. I thought I'd be able to start putting my life back together and making myself a priority now, but my parent's need more and more help and I'm the only one here to give it to them, as my sister lives out of town.

Sometimes I feel guilty for getting so stressed about caregiving, but it is definitely a tough job!!!  Hugs to all of you doing it - it certainly is not easy!!!

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