It's been a VERY long time since I have posted, or even checked the forum at all. I think it was that subconsciously not reading about
or dealing with the task of caregiver, the challenge that Alzheimer's brought into our lives, I could have moments when it was easy to not remember.
However one phrases it, whether "one shouldn't judge another person's actions", "until you've walked in my shoes you have no right to comment", "every situation is different, every person is different and you have no idea how hard this is, that you probably didn't have the same challenges," , it is indeed a fine line should we start to cross it, of how one person is caring for another. There are many times I want to give advice, seek punishment for, blame everything on someone else, but have learned to keep my mouth shut.......for the most part
When it comes to several key issues that I am passionate about
, one being eldercare. I have had the experience, in the form of 3 years of full time sole caregiving to my Mom who had late stage Alzheimer's when I decided to move and provide her full time care in their home, as well as care for my Dad who had multiple health issues and some dementia. The years prior to Mom's rapid decline I was 600 miles away and had to resort to short visits and asking their friends and church members to report to me. That was difficult, but nothing more difficult and challenging than taking on the caregiving role.
I asked myself several questions before making my decision to quit teaching and move with the intent of providing live in care for my 90 year old parents. One had to do with the possible career suicide I was tempting by leaving a great job with no guarantees I could or would resume my position at the university. Others had to do with leaving friends and family, my only granddaughter who was 2 at the time, the comfortable life I had finally carved out for myself after an acrimonious divorce which left me devastated financially and emotionally. One of the most important questions, though, was 'could I summon up, and did I have enough patience to deal with the multiple crises'. After a few trial weekends before making my final decision, not only did it cement the fact they needed full time care, but that patience was going to be an issue every day and that at any time I lacked that patience and gave either of them less than the exemplary care they deserved would be the time to step away and put their care into the hands of professionals.
All this is to give a gentle reminder that Alzheimer's robs people of more than just their memories. It alters their judgement, their emotions, their reactions, daily habits, fears and all ability to censor themselves verbally or physically. They develop a heightened sense of fear, suspicion, anger. It was therefore my job to do everything and anything possible to keep the environment as stress free as possible. That is very difficult when trying to clean up the 4th bowel movement accidentally made on the couch, showering and cleaning Mom up, watching that dinner didn't burn, speaking calmly to my father so he wouldn't lose his cool, and reassuring Mom that everything was alright. It took all I had many times, but I refused to yell at her (and I have a very healthy temper!), cause any undue distress to her or my dad, or cause more chaos in the house by my actions. I took the responsibility very seriously, the one to make every day one of quality for my Mom. I promised to give up the care when I was not contributing to the quality of her life but instead reacting with harsh actions or words. It isn't that it was easy to control that, I just knew that my mother would NEVER do what she was doing had she been able to control those impulses, that it was the diseased and different mom who faced enough fears and uncertainty already. If I felt that things were getting out of control I would do what I did as a mom and as a teacher. That is, to step away from the situation for even a minute, but long enough so that my reaction and words would not come from anger. I stepped away and out of the room MANY MANY times, sure that I would do or say something that could never be unsaid or undone.
To anyone taking on the challenge of providing care to their loved ones with Alzheimer's or any other form of dementia, the road is hard, there are lots of falls, the quality of your own life suffers as you increase and add to the quality of life for the people you are caring for, you face emotional and physical pain on a daily basis, you feel unloved at times, unseen by others you thought might help you, unhappy in this new world and environment. But it's a thousand times worse for the one suffering from this disease. The caregiver has to find, restore, maintain a loving and calm environment and oh how terribly difficult it is. I would suggest and advise anyone fulfilling this role to have adequate respite care if possible (something I didn't have for 3 years), counseling or some kind of support group to help you in this new and demanding role. Actions and words toward the one with Alzheimer's, done and said in anger, even in deep frustration are felt so deeply by them and their feeling of safety is threatened. The actions and words said angrily are not forgotten. Yes, these people forget easily, but they do have a keen sense of who they can trust, who is loving them, and if they are safe.
They are much like a newborn baby. That baby is not going to remember an angry new mom screaming when having to get up for the 4th time in one night, calling her new baby names, even threatening actions or words which she doesn't mean at all. However, every word, every action, everything experienced by that baby shapes the world in which they live in, the way they react to and fear certain sounds or people. Their early environment shapes the way in which they view the world, and it shapes the way that baby is going to be as they grow up.
If we can think of Alzheimer's in this same way, that someone with Alzheimer's is like a baby, being shaped by their environment, giving the caregiver a very important role which is to create a loving and stress free home, as best as possible, a world for their loved one to "grow up" in where they know instinctively they are safe, loved, and protected.
I didn't mean to sermonize, but after attending Alzheimer's events all across the United States this last year, I heard so many stories that touched my heart in good ways and some that made me want to go up to the person and tell them they should not be acting as caregiver if this is what they are doing or saying. Will we all make mistakes occasionally? ABSOLUTELY! But never be fooled and assume that their disease protects them from remembering anything. Actions and words are imprinted on their diseased brain, just like a newborn baby.
Best of luck to you caregivers, and please seek help if necessary, and remember that as difficult as this time is, it is still time with that loved one, a time you will never get back. It has been over two years and I miss my parents intensely. And I have no regrets, it was not a sacrifice to trade roles with them and be the parent, it was an honor to provide them the best life possible as they were leaving this world.
Prayers and healing thoughts to all of you,
Linda