I've always been a writer
It's just that the need
to make a living
got in the way
Change and an Elder Parent:
High Anxiety in an Unfolding Odyssey
My mom was in her late 90s, and except for partial deafness, advanced neuropathy that makes mobility either impossible or a danger for her, and some declining ability in cognitive processing, she is remarkably healthy. She was even a long term cancer survivor, although the fear of a recurrence never left her.
Suddenly in June of 2016 the facility where she was living in a nice little apartment decided that she was no longer meeting the criteria for assisted living -- being able to dress herself, take care of her own bathroom needs, get herself up out of a chair on her own, and independently move around with a walker for up to 200-300 feet.
Someone recently said that basically the rule for assisted living in her state is that she had to be physically capable of exiting the building without help in case of fire. There is no way she could do this. She'd be confused, disoriented, and physically unable to get to a door. And she'd be inclined to wait to be rescued by someone in authority, as has always been her basic decision making style.
She'd been having more falls in the last 5 years or so, and thankfully had never broken a hip or ribs or anything. But due to the neuropathy, her legs just collapsed without warning and down she'd go, even when holding onto something for balance.
So one day out of the blue -- without notifying family in advance of any observations that this might have to happen -- the facility suddenly decided to transfer her over to a rehab unit that they operate for some intensive physical and occupational therapy to see if her capabilities could be improved.
Thus started an odyssey of mounting anxiety for mom, my brother and me, as well as for the woman who has been her main support in our absence. Looming over us was the unanswered question of whether she would be allowed to live again in her apartment. If not, what kind of permanent residential facilities did they have in this 24/7 nursing and rehab place. What would daily life be like for her now in a nursing home, with all its intrusions and medical milieu?
Anxiety started to mount from the implications of this change in her status quo.
When would the decision be made, based on what, and how soon would we be required to clean out the apartment and dispose of her furniture and treasured possessions collected over a long lifetime. My brother and I live on opposite sides of the country, with mom in the middle, so these questions rippled into the arrangements that needed to be made for us to get there.
With the transfer, communication with both sides of this facility became somewhat difficult, and when I called for status updates, I was refused information. Seems they couldn't find the HIPAA form that gave me permission to have any details. Outrage added to anxiety.
My brother spent the first week with her at the rehab place, his anxiety skyrocketing by the seeming unwillingness of the staff to give straight answers, and the cold, hospital-like atmosphere. Mom was crammed into a tiny double room and soon had a roommate suffering through end-of-life palliative care for cancer. All privacy for mom was now gone, and her ability to "entertain" friends who wanted to visit was severely limited, as there was literally no place for them to sit.
Not being able to socialize with her friends and feel even a little like the gracious hostess she used to be was devastating for her.
During the first week, PT and OT specialists reassured us that they were working hard to help mom return to her apartment. They were cheerful in their optimism while also being somewhat vague in providing us any details what would allow us to do some pro-active planning, just in case. My brother returned home, and I breathed a sigh of relief. At the end of the second week, a conference call again assured us that they hoped she would be returning.
But by the third week, the veneer of hope and pleasant interactions with nursing staff began to wear thin. Signs of disrespect began to accumulate, longer waits for response to call buttons, and scolding for asking for assistance became more frequent. Mom plunged into depression, affecting her energy and ability to make any progress with therapy. My brother and I became anxious again, and still the initial questions were never answered.
Mom had a friend she has employed for many years as a personal assistant, but when this odyssey started she was having a family crisis of her own and not on the scene for a couple weeks. By the time she got involved, she quickly determined that mom would have to be moved to another skilled nursing care residence. She enlisted the help of two other friends of mom's, and they scouted out possibilities. Within a week they had decided on a new place, and asked for John and I to consent to initiating a relocation process.
It's concerning to move a 97 year old person into a place you have never been to. Anxiety increased again, not the least of which propelled by the hasty decisions and actions taken that mom had not yet even been informed about. Thankfully they had a website, and I was able to speak at length to the CEO. He answered my questions fully and directly and I began to get a better feeling about forcing this change on mom.
Unlike the other 2 places where she has lived since moving out of the home I grew up in, this place had one room available immediately. A deposit had to be paid within 3 days. Mom still had not been told, and by now my brother was spending a week virtually unreachable in the Adirondacks. Good for him -- he needed the de-stressing time away.
That 3rd day was Friday. Mom was told and agreed to the move, but immediately started to worry a lot about moving all her things. She didn't understand or couldn't clearly hear the explanations that she would going to a one room accommodation, and wouldn't be able to take everything. Worse, it is unlikely that she will be able to return to the apartment to select what to keep and what to say goodbye to. Much of what she had reminds her of her life with dad, who died 18 before, and keeping them kept him alive for her, in a sense. More depression and anxiety build up.
Whirlwind change always whips up anxiety, and this time is no different. The deposit was made on Friday, and the move was scheduled for the following Monday. Everything was happening so fast, and we all hoped the outcome would be much better for mom, but while it was in process, there was a lot of anxiety for us all.
The best we could do was stay in close communication, remember to breathe, and each of us take care of ourselves in the ways we need to so that we can be receptive and supportive to each other.
And that's my long-winded message for you, dear reader. When in the midst of a fast-moving transition where many variables are unknown, or have unyielding timelines, or other unpleasant / difficult factors to negotiate, my advice for staying sane is to:
identify a central decision maker
stay in close communication with all stake-holders
demand the information you need
take care of yourself
do everything you can to reassure your elder
anticipate your elder's sense of loss due to the memories attached to physical possessions
take photos of all the items that will have to find new homes so your elder has a visual record
assign tasks to each person who can be present to help, so that everyone who cares about your elder has a specific way to be involved if they want to be
be watchful for how the change can be celebrated with your elder in their new location