An Introduction to Me and Mom

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An Introduction to Me and Mom

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(Editor's Note: We welcome Colette to our blogging team today. You can connect with Colette on her profile page: @colette.)

structure-746577_640Hi all. I live in South Africa, I am 58 years old and my mom is 94. I have two sons who live overseas and locally have one daughter a son-in-law and a darling granddaughter of 8 years old. They live across town; on the weekend when traffic is not heavy on the free-way, we are a mere 20 minutes away from one another.

My father passed away more than seven years ago and soon after I started to notice that Mom was not seeming to cope with her housework and she started making uncharacteristic, bad decisions. I had to take Mom to a neurologist as she has light Parkinson's and he immediately remarked that Mom was showing signs of dementia/Alzheimer's. Mom then moved in with me. In the first year or two, there were some signs that she was deteriorating but she would still knit from morning till night time. And she would read some articles in magazines which interested her. From the day that she told me she no longer wanted to knit, her behavior took *huge* steps backwards. I had heard of AD. My mother's mom had died due to AD and Mom also had a brother and sister who also eventually died in AD care homes for the elderly. (This was in the Netherlands where Mom was born and raised.) Mom comes from a very big family. In all, four of them did not make it past the age of 9 due to various illnesses so 14 children remained.

I did not know all that much about dementia/AD but I did a whole lot of reading on the subject and did as much research as I could on the internet just so that I knew in which direction this illness could eventually take my mother. What I somehow did not understand was the depth of how much this illness affects the carer who will ultimately end up taking care of their parent.

I grew up a very unhappy child in a very dysfunctional family. My mother was the housekeeper, the cook, the cleaner. She made her own clothes, painted and wall papered the house walls, she baked and worked herself to a standstill being 'the perfect' housewife. Her great love was my now deceased brother who was 18 months older than I am. If someone would have told me that I had been adopted (with high respect for all great adoption parents!), I would have been able to make sense of the coldness, the lack of affection and always feeling as if I was just standing hidden away in the shadows and that I was almost invisible. (In hindsight, I started to somehow be able to understand that growing up in a family of 14 children. All any of them got was at most food on the table, hand me down clothing, a roof over their head and that was about it. So if you have never received love and attention, how can you pass that on once you have your own children?)

I left home at a very young age. I was 14 years old and never returned to live there again. I got married at the age of 16 but still kept on visiting very often. Through the years, it was me who would clean the house if Mom was not feeling well. I would cook meals in my home and put them in my parents fridge if either of the two was not so well as I just always felt that during rough times, you help out. Helping out even became my mom literally inviting herself to go along on vacations with me and my three children (husband had to work) even though I would have preferred her to not have come along. I just always tried to please her. To show her that I *was* a good/decent person. If they needed to go to the doctor or either of them ended up in hospital. I was the one to do visits throughout the days, taking care of whatever needed to be done. I was always there for my parents. Always the carer but never being cared for. When it was my birthday, I would get good wishes and a hand shake. I was never touched, never hugged, never told one positive thing about myself. (That did not even happen with my brother. Affection was just not the 'done' thing.)

And fast forward to today and I often sit here and wonder about life. The child she felt the least for was the child who actually cared for her from when I was a child, then a teenager and later as an adult. My darling brother died many years ago in an accident so I was now their only child. I was the one who tried to pick up the pieces for my parents as they came apart at the seams. They cried, I comforted. It was about two years later, while watching a caving documentary on the National Geographic channel (my brother died while cave diving) that I cried for the very first time. I cried for hours and it was then that I fully started realizing that Mom was the way she was and I could/should simply love her as she was. A flawed human being.

But as the AD progressed further and further, I started facing incredibly tough challenges. When Mom could no longer wash herself even though she desperately clung to wanting to do it herself, I had to take over simply to make sure that she was properly clean and that all 'bits' had been  cleaned. Having to undress her. To touch her while washing her. I felt as if I was violating her sense of being in the worst possible way. She would stand in the shower with her eyes only looking at the water going down the drain and she would not look up until she was fully dressed. That sense of intense privacy which had been such a barrier between her and me for all of my life, even in her muddled, AD mind. She still could not accept that her own daughter was now having to wash her. I would try to sing some of her favorite Dutch songs in the shower to try to distract her and to get through to her that it was 'okay' for me to take care of her but to this day. She will not look at me when I wash her, when I have to take her hands or feet into my lap so that I can cut her nails or rub cream onto her body when her paper thin skin is very dry. Even trying to comb her hair is quite a to-do. She will immediately grab hold of the comb or brush and say "I'm fine." I can literally see her breathe out when I put the brush down and yet she now is at the intellectual level of a child but this ingrained fear almost of us touching--it's still right there just under the surface.

I often just want to put my arms around her and tell her "Mom, it's okay. I just want to hug you. I don't mean to make you feel uncomfortable and I just want to be there for you" but she doesn't understand. For over five years I have had to wipe her bottom, have had to clean up excrement when she has 'the runs" and she leaves a long trail of poop from her bedroom to the bathroom. I have held endless buckets under her chin when food decides it wants to come back up and have cleaned up the "sick" from the couch, the coffee table, her bed and almost everywhere. But she still pulls her hand away in a sudden, quick jerk like fashion if I, in a moment of sorrow for her having to now disappear into this miserable disease, if I put my hand on hers without thinking.

And then I have moments when all I can see around me is darkness as I do SO much to try to make her last few years as comfortable as possible and I ask, "Why me, Lord, why me?" I have times that I think I cannot take care of her one more day, one more hour. I just want to get into my car and drive away as far as possible and never come back again. And I feel guilty when I think that way because I know she can't help how AD has taken over her mind, her memories and things which in a limited way we *could* still speak about years ago.

And I have also had to give up any hope I always had when I was much younger that perhaps one day when she would become older that she would mellow somewhat and that she would see a caring daughter in front of her. Behind her and to her side if that is what she needed at that time. I spent my life trying to be visible and I have times when I must pull myself back from feeling resentful of the fact that in the end I am the ONE person who has stuck around, who has always been there for her even though she could never see it way back when and now she cannot see it due to AD.

The irony often goes through my mind that I have now landed in a small apartment, 24/7 locked up with a mother who subconsciously never really wanted me in her life and that, through no fault of her own (now), the loneliness which she represented in my life as a child and even as a young adult, that this loneliness is what binds us together in these, her last years of life. She has no one else to look after her and I simply could not just walk out on her now when she is at *the* most vulnerable stage of her life.

I look in the mirror and I don't recognize the ME who stares back. Grey hair. No time or energy to still dye it to look like the blonde I was my whole life. Unvarnished toe nails which would NEVER have happened as I took so much pride in looking my best and now I cannot even reach my toes any longer due to some damaged vertebrae in my back, a right hip which needs to be replaced and a wonky left knee which also needs a replacement. I just can't do any of the "engine replacement" or the external primping because I have been called to be ALL that I can possibly be in the very best possible way that I can be--tired, worn out and often teary eyed on this journey which Mom and I have to make together.

God bless all AD carers out there for those who also cannot afford to put their parent in a care home. I have the utmost love, respect and admiration for you!

Wishing you all love and light on this journey you make with your loved one....

Colette xoxo

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11 Comments

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Ladyleo

Thanks so much, Pegi. I also look forward to getting to know all the wonderful carers who are on this site. :-)\r\n\r\nColette xoxo

LilMagill

Oh, wow, Colette - it must have been so hard growing up without affection and never getting acknowledgement of what a loyal daughter you've been and how much you've sacrificed. Welcome.

Jean

Welcome Colette.\r\n\r\nI still have tears rolling down my face from reading your post. As Denise said, your words so powerfully captured the range of emotions and life of a caregiver. My mom had AD and my mother-in-law whom I cared for for 10 years had vascular dementia. They both died one year ago. I can relate on so many levels, wanting to run away, the lack of self care, the physical decline in your own health..... But it makes me particularly sad, that you lacked the affection and love you craved for so many years. But I believe you are right.... your mom did what she knew... it's hard to give what you don't or never had. But I think it's amazing, that you have the heart and fortitude to care for her, that you choose to be the person who cares. Thank you for sharing with us.

Lillie Fuller

Thank you Colette for sharing your story with me! I am sad for you and for your mom! I can't imagine being raised with no affection but I know that it happens. I look forward to reading more from you! Please continue!

Denise

Ah, Colette, as I reading, I couldn't help but think that you're writing one of the best accounts of what caregiving is like. Thank you for your honesty and your story--you help so many by sharing what your day is truly like.\r\n\r\nYour description of providing personal care to a mom who struggles with the vulnerability of being touched, wow! It makes me want to cry for both of you. \r\n\r\nPlease keep writing to us, Colette. Your words are incredibly powerful.