I got into the perplexing world of senior care by chance not by choice - 1996 marked the beginning of my personal journey as a family caregiver.
Although we lived in the same city since 1984, I moved closer to Dad’s place and changed jobs so I would be more available to him during some major repairs at his condo. In those days, I would call him frequently, cook and clean for him after work or on the weekends. I am his only child, and I am unmarried and have no kids. I was an office professional, never a real career climber, but I always worked. Dad at 86, was still living on his own, driving and had some activities and a close relationship with a neighbor lady. One stormy day in 2001, not long after I phoned him from work and suggested he not go out since it was raining so hard, I got a call from a neighbor that Dad, now 91, had fallen while out on an errand and dislocated his shoulder. It had to be surgically reset in the hospital.
After this, our direction changed dramatically. I had seen some depression in my Dad in about 1997 after his first lady friend had died. I gave him an old computer and later WebTV which he just could not grasp, so I gave them away. He was once a very smart man, a Wall Street banker by profession. At that time, he rallied, probably due to the attentions of his neighbor lady. This time, the closer I looked into his affairs – stained and torn clothing, papers piled randomly, repetitive questioning, unusual food purchases, fixating on various topics – I knew instinctively things were going downhill and I had no clue how to proceed. I tried to get him a part time helper, which he refused. My Dad was “independent” (which I now know is a euphemism for “difficult”). I knew nothing about dementia, senior care, health care or social services. But that was all about to change.
Dad lived in a 55+ community which had been very good to him. After much wrangling, I convinced him that we should buy a house together in his neighborhood. I resigned from my full time job. We chose a fixer upper with a nice view. I moved in first and did a cosmetic remodel. At the same time I packed up his condo and prepared to move him into our house and put the condo up for sale. I was really tearing my hair out. This “partnership” had been my idea, but I really had no idea what it was going to entail. I soon discovered my challenges and responsibilities were going to increase rather quickly.
In 2002, after a few rough months of transition into our pleasant home, we settled into a routine and I could leave him for a few hours at a time, so I could shop, exercise, see friends etc. We got him a personal alarm, which he wore reluctantly when I was out, although he marginally grasped how it was supposed to work, and he couldn’t hear the speakerphone anyway. I now realize those are primarily to offer a (false) sense of security to family members.
By 2003, I was interviewing paid caregivers, since I felt I could no longer leave him unattended. I had absolutely no clue how difficult it was going to be to find capable help. This became my second biggest job.
By now I was becoming more educated - I attended workshops through the Alzheimer’s Association, etc. joined an online support group and read books on aging and dementia. There were not as many blogs and advocacy sites as there are now, but I used the Internet extensively for research also. I volunteered as a Long Term Care Ombudsman (advocates for nursing home residents). We took five weeks of training and what an eye opener THAT was! There is tremendous room for improvement in long term care facilities. I served for a year, before it became too difficult to find the time and hire a caregiver.
2004 -2005 were relatively stable years for us, with the exception of the incredible hassle of hiring, training, supervising and terminating a revolving door of paid caregivers. Dad attended Adult Day Care a couple of days a week for about two years, which was a godsend.
In 2006, Dad started to have more health problems, and was hospitalized. He was extremely agitated (called delirium I later learned) and was restrained and required a sitter in his room. He was discharged into a SNF which was not really suitable for an ambulatory dementia patient, and I had to bring him home asap. Problems with incontinence and more behavioral issues were coming up. I was getting more and more over my head.
I began to research residential care options, and drew on my Ombudsman knowledge and a ton of Internet research, not so easy at the assisted living level. As such I was a tough customer. I probably visited 30 facilities, from small homes to skilled nursing. By mid 2006, he was on hospice.
In November 2006, I placed him in a small “board and care” recommended by our hospice RN. It was lovely, and owned by two nurses. I spent a huge amount of time fixing up his room, and getting him settled and visited him several times a week. Things went well for about three months. We celebrated his 97th birthday first week of March 2007. I got a call on March 15th that he had fallen in his room when he was briefly unattended. Just the day before he had been discharged from hospice, since he had been stable. He had a lot of anxiety, and was on a small dose of Seroquel. He fixated on things like “what day is it?” or “where is my wallet?” I will always believe it was this anxiety, and/or dizziness from the Seroquel that caused his fall and resulting hip fracture.
Paramedics took him to the local ER and he was hospitalized out-of-network (no beds at his provider hospital). The hip surgery was successful but I could tell he was not doing well. The hospital was uncaring and I had to scream at them to get a sitter in his room. I never saw the surgeon again, all they wanted to do was discharge him asap. Finally they did, into the same SNF he was in before. He continued to decline. I hired an agency caregiver to be with him from 9 pm to 9 am and I was on vigil 9 am – 9 pm, so he was never unattended, and we managed to obtain plenty of attention from the SNF staff. By this time he had pneumonia, in a coma and we got him back on hospice, which also took some screaming on my part to get past leaving endless phone messages. He was heavily medicated. This was not the “good death” I had hoped for, after micromanaging his care for six years. He died on March 25th. I was with him when he passed.
My personal journey with senior care has continued. Sometimes I think I’m doing this to atone for times I “missed the mark” in caring for my Dad. It is easy to second guess decisions I made, and I have my regrets about times I lost my patience with him, and with the healthcare system and senior services providers. I made choices I’m not sure I’d make again. Hiring unstable “live in” caregivers? No way. Seroquel? Probably not. Placing him in the board and care? Probably not. He didn’t fall and break his hip on *my* watch. But looking in the rear view mirror is not helpful going forward.
If you had told me five years ago I would be working as a companion caregiver for home care agencies, I would have said “you’re crazy”. I started doing freelance “personal assistant” work, including private duty caregiving in late 2007, after resigning from a dysfunctional office job I accepted shortly after Dad died. I signed up with home care agencies in 2009 after being without work for several months during the fall 2008 economic meltdown.
I have become an eldercare activist, and in many ways I consider home care agencies to be the sweatshops of the 21st century. The home care agency business model just does not attract the best of the best. My main justification for being an agency caregiver is to BE THE CHANGE I want to see in the profession - to raise the bar for better quality senior care. My secondary mission is to educate the elders’ family members, since I know firsthand how bewildered and frightened they can be.
As I became better informed about dementia and issues of aging, I learned to combine the power of observation and good intuition. I still use this “instinct” on my home care cases, and I escalate various concerns to my employer and/or to the family. I watch for telltale signs around the home, new symptoms, behavior changes, and agitation. Although I have no medical training, I often weigh these perceptions more heavily than I might weigh the elder’s feedback, and sometimes even the doctor’s opinions. And then I take action and call in the other members of the care team. As Secretary of State Clinton once said about child rearing, “it takes a village” to provide quality eldercare – everyone brings special skills to the table. A proactive caregiver, observing and managing small functional details, has a big impact on an elder’s well being. Sometimes it is inconvenient and unpopular to take a stand or be a crusader or the “voice of reason” on difficult issues – needing a higher level of care, driving, incontinence, medication issues, spiritual or mental health concerns, mobility and safety issues and the myriad of complex issues faced by elders. In this chapter of my journey, I try to maintain as high a standard of care for my clients as I did when I cared for my own Dad. And I do so imperfectly, just as I cared for him imperfectly. I do my best, and I am still learning every day.
Old age, as well as caregiving, is no place for sissies.
Jane MacKenzie is a self described woman that gets things done and aspiring writer/blogger. She lived Alzheimer's from the Front Row while caring for her father.
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Original content Jane MacKenzie, the Alzheimer's Reading Room