One thing that I have learned is a quick way to tear a family apart is for a member to suffer from a disease that has no cure, even if it gives you time to come to terms with the person’s eventual demise. However, the constant changes, twists and turns with the condition doesn’t allow for you to get to grips with it. There are so many issues and concerns it’s unbelievable.
First of all, you have to accept that the person you knew, in my case mother, is slowly disintegrating. She suffered from Dementia and Alzheimer’s.
I became accustomed to the role reversal. I was now the parent, taking care of the bills, medical visits, medicine, the house, the carers, and walking a path that I had no former training or experience in. I was as green as you could be.
Learning a new role, a new job and figuring out day to day how I was going to deal with whatever new issue, or behaviour would be staring me in the face that particular morning or night; dealing with people speaking to me and acting as if my Mother was the white elephant in the room, people not acknowledging her as if they couldn’t see her.
I was determined to give her the best quality of life and keep her life as normal as possible. There were things that we loved to do that we could no longer do, such as going to the theatre, watching a movie at the cinema, going out to dinner or to the spa. She couldn’t concentrate for long periods and had a habit of continually wanting to go to the bathroom but not really needing to go. I figured out that she was afraid of embarrassing herself, so she would constantly go just in case.
But then there were also the kind friends who supported me all of the way. Her hairdresser always did her hair as beautiful as she always had with a standing appointment every two weeks. My manicurist gave Mum her regular mani/pedi every two weeks. My mother was always elegant, well dressed and kind.
As her memory began to fail and more confusion came into play, it was important to maintain a routine and not change anything. The irony of this was while she was changing everyday – mannerisms, motor skills and sleep patterns – or the lack thereof – it was important that everything remained the same.
Tuesday, Thursday and Friday she attended a Caribbean Senior Centre, which she loved and gave me some respite. She had a carer come every day Monday through Saturday for two hours to help cook and spend time with her or whatever she needed so I could get a break and her social worker was one of the most amazing people I have ever met. Mum’s two closest friends Enid and Joan, called regularly and visited her often.
Her close friend and right hand Erlyn supported me in everyway possible and I don’t know how I would have survived without her. My friends listened to my frustrations and fears along with my wins here and there. My Mum’s family is very small, so I had a long distance support system who had very little idea of the intensity of the day to day.
During this time, I manifested the love of my life. He became my rock and became a shoulder to lean on and eventually to cry on. He grew his own special bond with my Mum and came to love her and her love him too.
Fortunately, I had a few good friends who had experienced the same thing and walked me through the tough stuff; like make sure you have a Power of Attorney in place, try not to change things, remember when she screams at you or says nasty things it is not her and make sure there is a will in place. If she forgets you it will be hard but remember it’s the disease, not her.
Thank God for all the support and advice I received as it all but kept me sane. On many days I would tell people if they saw me on the front page of the local newspaper for losing my mind it would be true. Every day was a test of love, strength, patience and compassion.
Dementia and Alzheimer’s are awful diseases. I was fortunate that my Mum remembered me until the day she passed. We laughed, we danced and I cried a lot. I often lost patience and my temper at times but I am so glad I told her I loved her often and kissed her often and hugged her as often as she would allow. I was honoured to have spent her last days with her and more honoured that she allowed me to do so.
You see our relationship was constantly changing and learning how to meander that change was challenging but well worth it. If I had to do it again, I would do it again in a heartbeat. Family is everything. If you need an objective ear contact a coach or a counsellor. Make sure you check in with your family and enjoy the time you have with each other. As you never know how it may end.
Love you Mum . . . Always.
Michelle is a Relationships Coach.
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