Up until this blog entry, I have been writing about topics related to grief and loss surrounding the illness and death of my Dad in July 2010. Of late, I have been struggling with a painful turn of events relating to the care of my Mom, who is 92. In many respects, the pain and grief emanating from my father’s illness and death were easier to cope with than the story I am about to share. I share these details and the story beneath them to support other adult children or families struggling with a similar set of circumstances. You are not alone.
In the Fall of 2009, before Dad’s death, Mom was diagnosed with memory deficit/dementia, which according to her doctors is the terminology used to describe the early stages of Alzheimer’s disease. She has seen a neurologist several times a year to check on the disease’s progress. This physician has prescribed the maximum dosages of Aricept and Namenda. (These are Alzheimer’s drugs designed to slow the progress of the disease, but they cannot stop or reverse it.) In addition, Mom has suffered from depression for some time and is currently taking a low-level anti-depressant. Since September 2009, all of Mom’s doctors have made it clear to us that she cannot be alone, and as a result, we arranged that she be assisted 24/7 by a live-in aide.
My Mom has always been a very social person, thriving in situations where she could be interacting with others. Since my dad’s death almost 10 months ago, Mom has stopped cooking (something that always brought her joy and pride), her personal hygiene is minimal (she depends on her aide to remind and then assist her in bathing) and she continues to isolate herself more and more. It is not for lack of opportunity that Mom does not go out. My wife visits 4-5 times per week. We encourage and invite her to join us for church to hear our children sing; 9 times out of 10 she calls us that morning to cancel. She goes weeks without going to the hairdresser, often canceling the day before in anticipation of not feeling well enough to go out the next day. My very social mother was locking herself away; going over a week at a time without venturing beyond the walls of her small condo, not even to the downstairs of the building to retrieve her mail. When we are able to get her out for absolutely necessary doctor visits, we actually had to “trick” her into shopping trips. She stopped shopping for herself for clothing and uses safety pins to keep her pants up since her weight loss last year. This from a woman who truly loved to “take inventory” at her favorite stores and was always aware of the latest fashion.
The combination of depression and grief has advanced Mom’s memory impairment. Her conversation is increasingly repetitive and confused. While confident talking about stories in the past, she often uses generalities to cover for information she is less sure of. Last Tuesday during a physical assessment her doctor asked Mom some simple questions. When asked what year it is, she answered 2005; she did not know what month it is. She continues to recognize all of us, but usually calls her current aide by the previous aide’s name. When talking to others about her husband’s death, she relates that it happened as recently as the week before.
After much time, thought, research and emotional energy, my wife and I chose an assisted-living facility very close to her current home and ours. It is a beautiful residence very unlike any nursing facility I’ve seen. It offers increasing levels of skilled care as residents require it and contains a portion dedicated to the care of residents with Alzheimer’s disease, for when and if she requires such a level of care. The staff is competent and generous and has designed a program and living environment within which residents can be engaged and stimulated socially, intellectually, emotionally and spiritually. Meals are taken in common with table-mates set up according to compatible personalities, common interests and preferences. Residents are encouraged and expected to participate in activities with little time necessary to be spent alone in the personal living space. For all practical purposes, this new home seemed to be an answer to our deepest desires that Mom regain a deeper quality of life and reconnect with some of the social person that she has always been.
We took my mom to visit last week and showed her the entire place, including a choice of rooms she would reside in. She thought it was lovely and agreed to try it. Once the decision was made we acted quickly to maximize the benefit to Mom. In a matter of days, we arranged for her to move and contracted with movers to take significant furniture to beautify her new living space, which consists of a large living room, spacious bedroom and ample bathroom.
The transition and outcome were extremely difficult. We knew there would be resistance, but it came at a level unlike we had anticipated. On the day of the move, it took over an hour to get Mom out of bed, and almost four hours until she was in the car leaving her condo. She had no recollection of ever having visited her new residence, even though it was less than 72 hours earlier. She had no memory of agreeing to try the new location and began to accuse us of “putting her away.”
In the week or so since she has moved to her new residence, Mom has been very resistant and angry towards us. She calls my home as many as 25-30 times per day. (In the first 36 hours she called almost 100 times.) We have been in touch with staff and see for ourselves that she is often actively participating, smiling and laughing, but she continues to insist that she hates it. She reiterates that we have put her away in an old-age home, and intimates that if we truly loved her we would not have “done this to her.” She can admit that the staff and some residents are lovely and even that the food is good, but insists she “doesn’t belong there.”
There are many layers to the struggles indicated above. Most obvious is the emotional tsunami afflicting my mother. She is the one experiencing psychological and emotional upheaval. Yet closely tied to her experience is the roller-coaster of feelings and the questions that arise as I analyze motivations and outcomes associated with making such a decision.
For those of my readers faced with such a decision one thing is certain: focus on the outcome. In this situation the only criteria is: What will best improve the quality of life for my Parent? When holding the responsibility associated with being Power of Attorney and Health Care Proxy for our parent(s), it’s difficult not to be swayed by feelings of guilt or other emotions that may cloud our judgement regarding what may be the best and only decision. It’s easy to write such a sentence in this blog, but it is very difficult to be in the moment, being buffeted by the opinions of others. There have been significant reprisals from the family balanced with gracious support from less expected places. Relish support from any person or place and disregard those who are unsupportive, even if they are family. Try to remain focused on what will be the best outcome for your parent.
Care for a parent is not a committee decision. The responsibility ultimately falls to the one who holds power of attorney. While you should garner input from “emotional stakeholders,” you should then move forward with the best decision you can make, even if it is not unanimously supported. As the Alzheimer’s Association warns, beware of guilt. Guilt can be related to:
On the day of her move, we kept reiterating to my mother that we felt she had put herself away by isolating herself in her condo and crying for hours each day. We lovingly told her that we hoped with this move she could be more a part of our lives as she once was. As we drove her to her new home, she let these words slip out: “Maybe things could be better.” Though this transition continues to be a very difficult one for all of us, we try each day to remain focused on this hope, this potential outcome — that things could be better.
Over the coming weeks I will add to this story in the hope that my first-hand experience will provide some support to any readers undergoing a similar family struggle.
Please check out the links below for practical suggestions related to caring for elderly parents from the Alzheimer’s Association and “ParentGiving.”
Peace on the journey,
I am sorry to read of your mom’s dementia and the passing of your father last year. Thank you for sharing your blog with the world. You are correct, other families are or will be struggling with similar circumstances. I find that most do not “talk about it”. I see adult friends taking care of their parents, struggling in self isolation, practically reinventing the wheel of what to do to cope. Although I wish you and your family did not have to have a parent with health issues, I look forward to reading your blog for insight into your experience.
Hugs to you and your family!— S - in Syracuse / May 16th, 2011 at 6:56 pm
Thanks, Vince, for sharing your journey through a very difficult caregiver and aging parent experience. We had it a bit easier with my dad, Frank, but it was not really easier on him to have to suffer a serious fall in order to be ready to make the change: http://www.desperatecaregivers.com/inside-the-assisted-living-experience
We are looking forward to hearing how your mom is doing in her new home.
Inside Aging Parent Care
There’s no doubt that your story is shared by many…thanks for the honesty. I look forward to following the steps of your journey and gathering the many helpful tips you share along the way.— CSC / May 17th, 2011 at 3:46 pm