My Story about Taking Care of Aging Parents
Today: Dad passed away one year ago due to complications with congestive heart failure in the elderly and chronic obstructive pulmonary disease. Mom lives in an assisted living facility which she cannot afford; she has Multiple Sclerosis and a seizure disorder. Taking care of aging parents with elderly diseases is hard work.
Leading up to today:
My parents were older than all those of my friends. That combined their multiple health issues on top of living very hard lives meant that as they aged they required (and expected) much help. The difficulty being that none of us 8 children were particularly close with either of my parents; but our upbringing dictated that we help without question. Only 2 of us that were physically able to help lived nearby.
The last 3-4 years of my dad?s life his health greatly deteriorated as he struggled with his own medical conditions and attempted to be my mom?s caregiver. We as a family struggled with knowing that mom required complex care facility placement to manage her needs and the issue of my dad refusing to have her placed; he had promised her when she was first diagnosed with MS and he felt that the least he could do in this lifetime was honour that promise. The difficulty being, that in his upholding his promise, the workload for my brother and I grew exponentially.
Complicating this was my dad?s need to be in control, independent and to still be seen as strong - which made it very difficult for him to simply accept our help graciously. Rather, he needed to make it seem like we owed it to him or that we were his (un) paid help.
My parents lived in a suite in a house with my brother and his family living upstairs. My brother was unfairly called upon to help several times a day and even during the night if someone fell or was scared. Beyond that he was never able to squeeze out from under the thumb and watchful (and judgmental) eyes of our father, which had adverse affects on his relationship with his wife and young family.
We started with the struggle of gradually taking dad?s licence away (somehow he managed to pass his exam when he was 80!!! Not sure how that happened!). Being a very independent man who started driving long before a licence was required he was certain not only could he drive well but he could teach us a thing or two! In order to make this change successful, with it came along the need for us to drive them everywhere...2-3 times a day to the corner store just because, to appointments, Sunday drives....
Shortly after that came preparing meals for them; we would cook meals ahead and put them in the freezer. Again, not as simple as it seems for of course they thought I must have hated them for I was trying to kill them with my horrid meals! And my brother in their opinion, well he simply fed them the left overs when he cleaned out the fridge (I am a pretty great cook...my brother always makes his meals fresh...).
We tried to draw the line at cleaning the house for them, but then dad made a deal with my niece ? whom he eventually fired as she was ?lazy?...
Sensing a pattern yet? The next number of years, which we knew were dad?s last, were very difficult to enjoy with them. Our time and efforts were stolen with duties that precluded us from being able to be child and parent. My brother simply withdrew into himself and became an android. I put on my health care mask (oh! I am a healthcare professional who works every day with elderly and/or people with chronic diseases, assessing their needs and providing guidance and intervention to make their lives safer and more enjoyable) to put them in the same category as my clients. I
didn?t have a strained relationship with my parents ? I had no relationship with my parents. At least not one in which I was their youngest child and they were my mom and dad.
Unfortunately since I do work in the health care field I was frequently called upon by my siblings to know what to do next. It was pretty straight forward in my eyes (have community care come assess them to then provide daily personal care assistance; hire someone to do their cleaning, errands, and laundry; order a meal service; have mom put on a waitlist for complex care and have dad put on the same waitlist for compassionate reasons - our health authority, having been under recent scrutiny now allows well spouses to join their partner in complex care even if they themselves do not qualify.)
Since I had a working knowledge of our healthcare system it seemed easy to me what the plan should be. It really surprised me to meet the same resistance with my own family that I see regularly with my client?s families. I expected the resistance I got from my parents. A true no win situation. I soon learned to just walk away.
In the months before dad passed away my parents moved into an assisted living facility as a trial (the facility managers were pretty sure they could not manage mom?s needs as her abilities greatly fluctuated). Dad only stayed there one or two nights as he was hospitalized much of the time. The cost of a private facility is exorbitant ? they could scarcely afford this place, but no other would do. It would eat away their measly savings in very short time.
Even right up until and in the months after dad passed away, decisions were left to me only to be criticized by the others. Staying by his bedside in the hospital despite the nasty (well nastier) disposition he had developed, talking with the doctors, making the calls (or at times deciding not to make the calls) to my siblings to update them or to tell them it was time to come... planning the funeral, making all the final arrangements...my brothers were paralyzed with indecision, grief or just plain incapability.
Now with a year gone by the process continues with my much less assuming and much more mild mannered ? albeit strong willed ? mom. She now wants to live in her own apartment independently (MS impairs judgment and decision making abilities...). The thought of what lies ahead exhausts me. It is awful to say but sometimes I wish I could just walk away. The alternative is to have a little cry, pull up my mask and start all over again...or not.
Moral of my story? Even being very well versed in the health care system and being a fairly strong willed person myself, I struggled to maintain that balance being a member of the family and becoming the overburdened caregiver. Support from any source you can find it and remaining true to your own needs will go a long ways to maintaining your own health (physical and mental) and may even help to preserve your relationships through to the end.
For my family, we all returned to our corners to deal with whatever aftermath was left in our hearts. Since mom is quieter, many are putting their heads in the sand hoping it all just goes away...I have called the community nurse responsible for clients in assisted living and told her the family needs her help to navigate any services mom may need and to arrange social work, occupational therapy and if deemed appropriate geriatric psych to be involved to address her latest desire to live independently and any other health care related issues. I have had a little cry and put my mask away. I want to try to just simply be her baby girl.
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