Statistics show that the ability of the elderly to continue to live at and be cared for at home is determined by the presence of a daughter. I am the oldest of 5 children, and the only daughter of a mother with advanced Alzheimer's.
My father told me that it was because of my help that he knew he could continue to go on, and on, until he died....and that he knew we would continue to care for her, in his absence. We did, and we do.
But now, since my father's death in August of 2011, it is because of my brothers that my mother is able to live in, and be cared for at home..completely by family members. Without my father's help, I am not physically strong enough to lift her, roll her over,and care for her as she needs me to do, so it is my brothers who now must do the majority, and the most challenging, of care. And I am grateful that they, too, were able to learn from my father's example, and rise up beyond their own fears and holdings to do so much, every single day, of my mother's life. It is a kind of challenging that you can only imagine if you have never walked that path, in such circumstances.
When I was living with them that year, and severely broke and dislocated my wrist simply by falling on the ice and snow near their home as I got the morning newspaper, I never dreamed that my care taking would only get harder, not easier. If I thought caring for them with two arms, two hands, and all of my strength was hard.....imagine doing it with only one arm, one hand, and in pain. I did it anyway, I was what we had.
My very first day of breaking my wrist, I still climbed in the bath tub and using my body as a brace, and only in an elastic bandage and a sling, held my mother upright, as my sister-in-law bathed her, and my brothers carried her to and from the bathroom. It sounds horrifying even now, I had not even yet had my surgery nor did I yet have my titanium place and 10 screws. That is the kind of hard that I have lived and survived.It took and it takes all of us, to do this hard work and nothing has stopped us yet. We rail, we complain, we cry, but we still do what we need to do. Right now, we have no other options...we have tried some, and they ended up far worse.
And yes, I spent 4 solid hours a day, contacting social services in my area ...and they were not 'free' and they were primarily for end of life situations and then not like they are down here. Alaska is very different and works differently than 'in the States'. We do not even have a Medicare office in our capital city, for example. To get a hospital bed in our home, I was directed to check Craig's list in Anchorage (750 miles away) refuse the mattress, find one of my own, and pay for it and all of its shipping to get it to Juneau. And while we were at that for my mother, we were also seeking to order a Cpack oxygen unit for my father's sleep apnea, ordering it, and shipping it ourselves....and learned to use it over the phone!
And we were told, mostly likely the motor on a hospital bed would go out in a few years and no one would be qualified in our area to repair it.So, to order and pay for a new one, then.That was the honest help and advice the social services tried their best to give me. Lots of advice, no real help of doing. And trust me, that was truly the best they could offer......advice. Each one told me to call the other one, next..it was one big vicious circle of seeming to offer help but telling me she did not qualify every step of the way, for free help. The tiny bit they made, and the aging homes they owned, made them ineligible for medicaid , and other services of care.
And the local Alzheimer's office simply offered me the chance to apply for a grant... and maybe get it, to help pay for Depends. I talked to others in my situation...a nurse told me that she had to hire, and pay for her husband's ex girlfriend to live with, and care for her own MIL, as nothing else in town was available, or affordable, and someone else told me since they could not care for their loved one at home, they had to send her to a care facility in Sitka...many hours away by personal boat or 35 minutes away by expensive air flight. Juneau's primary long term nursing home has as much as a 10 year waiting list, the smaller hospital facility ideally for shorter term post hospitalization care......it went on and on.
So, I learned....we all learned...to rely on our pioneer spirit and do it ourselves. And in that doing, we learned and were given so very much more. We learned that we can do the impossible. We might be on our knees, we might fight how challenging it all is, every single step of the way. But we can do it......and it is really, really hard.
I share my own intensely private experience, here, in as optimistic awareness of why bad thing happen to good people and how I, personally, cope with the loss..day by day...of my mother from who I thought I knew her to be. And the same challenges exist for all of my relationships...my father, my brothers, my uncles and my aunts. A.D. changes who you are ....and who others know you to be...whether you personally have the disease, or not. And it changes who you think you know your parent to be..even now, I have relatives with Alzheimer's Disease in their loved ones who refuse to see what is so obvious to others. You ended up in a vacuum of sorts, and can't seem to find a way out, only well meaning advice of others who have not yet walked in your shoes. And so I learned, we all learned.
By the third year into my mother's Alzheimer's disease, I found that there were ways, I could hold her hand, and using my own unique understandings of energy, and communication through nonverbal means, my mother would suddenly clear. When she 'cleared' we talked and we talked. She asked me to be 'the brave one' the one that would not be afraid to speak up to my father, or my 4 brothers for her, to help them understand 'what was wrong' with her, and what she wanted and needed me to say and to do for her.
I never dreamed what a challenge that would be. I didn't yet understand the denial that exists in families or even in ourselves when our loved ones begin to dramatically change. There were brothers stayed in deep denial for those three years, ones who already felt they were helping as much as they could, others who could not cope with a mother, a grandmother, or an aunt, in such a place, or facing such a condition. No one wants their own life changed, no one wants to give up the quality of their own lives to help make yours easier. They just don't, and they just can't.
In the beginning, my mother 'sundowned' ...her jovial self becoming one of anger, jealousy, and acting out. We worked through those stages, but it was overwhelming, trust me. And with my help, she and I 'cleared' and talked about 'how she would want to be' when 'things got worse.' I helped her verbalized her fears, and her desires, and somehow we figured out a way that I could trigger and help her remember 'how she wanted to be' and not how the disease wanted her to be.
My other family members did not always understand how, or what I did, and they did not always understand me. Often, there is great fear, or confusion, or even jealousy that can overwhelm other family members and make communication between and within families, even more challenging.
I didn't always blog about those days and those changes, my father was still alive, and he and my brothers would have been critical of my openness. So, I sought other ways to travel that journey..not only in my blog, but in my life, our lives, together. And the three of us..my mother, my father, and myself walked that path together..for years, working side by side.
I have learned so much from these challenges. I have been exhausted to the point of collapse. I have gotten far less than 4 hours of sleep per night for all of these years because of my own heightened awareness of her awakenings and needs in the night. It has led to complete exhaustion, an exaggeration of our own helping and health issues, and magnified all other challenges in each of our own lives.
We have had an extended family member come into our household to help us care for our mother and our father when someone had to be in their home at all times. And some of those choices have not been good ones. That family member, for their own selfish reasons, and own gain, worked hard to cause dissension among us and aggravated conditions and codependencies between family members already challenged by those issues. In the end, that family member did great personal financial harm to my parents and we have had to bring it to the judicial system, causing additional stressors, and expenses, and worries, and harm. We thought that the most common problem you face with nursing homes..theft by employees...could be avoided in a home situation. It cannot.
This is the reality of care giving...whether it is inside, or outside of your home ....in a nursing home situation. For even the best of people, under the best of conditions can make mistakes and learn to choose again. But unfortunately, those who have spent lifetimes with problems and issues who seek change, will only find themselves giving into patterns and negativity and make horrible choices based on greed and not love. Above all else, when you seek care givers, you must be able to trust them with the dearest and most valuable parts or your life.....your loved ones. You must not trust the insistence of others, you must trust your own heart and your own instincts. This I do, but others do not, or can not always do the same. And that alone has caused great dissension and even more challenges among all of us.
I have been able to channel my energies, call upon deeper spiritual awareness and strengths, and be who she needed to be for her, and who I needed to be, for myself. That has been my mother's gift to me through the challenges and ravages of her disease.That has been the strange flip side of this disease and my journey along side it. This mother is a very, very different mother. This father, before his death, after years and years of helping his ever changing wife, became a very tired and worn out father. We all changed in ways I never imagined we would have to during this process. Some of it was exhausting and some of it has been very dear, and very touching, and still filled with growth and love.
I send you my deepest understandings, if you are on this challenge Alzheimer's Journey with yourself, or one of your loved ones. The road is rocky and it is steep, and there are days when there are no answers, much less an end in sight.
But you are stronger than you have ever believed or known...and you can walk this journey. For you do not walk it alone. 5.4 million people have Alzheimer's today...just imagine all of their loved ones walking right beside you..and know that I am one of them.
I share this journey with you, as honestly as I can here, if not on my weekly blog. And I say to you...you are not alone. There is nothing you go through that I have not in one way or another. I understand.
With Heart and Hands,
Michele
