My parents are not my parents. The man and woman who raised me and who would join my family weekly for meals are not the people who carry around my parent’s ID cards now. It was a really hard thing for me to face as my parents changed. Before I visit my parents now, I remind myself of this fact.
I can no longer have a meaningful conversation with my parents. They don’t remember what is going on in my life, the ages or interests of my children or any of the life events we share with them when we visit.
I still cry when I think about the loss of my parents. Some days, I get a glimpse of the people I remember my parents to be. A witty remark zips off my mother’s tongue or my father will trot like he used to do when plain walking just got boring – I still savor those moments
When I greet my parents they still get hugs. I honor them with the respect they deserve, but I learned to not torture myself but pretending they are my parents and allowing the behavior and language to destroy my memory of the two wonderful people who raised me.
Some days, it’s still a battle, but it’s getting easier to manage. Coping.
If you are in my shoes, how are you dealing with your visits?
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Three important things to practice when visiting a parent with dementia
Dear Kay,
I’m not sure if this will help, but as always, I see things from the same side of the fence as your parents, as well as having some insight left to be able to consider it from your side of the fence. It does seem as if your parents are more advanced with the symptoms of their dementias, but I imagine it might be a bit similar for them.
When my husband and I did a Living With Memory Loss course through the Alzheimer’s Association here, the PWD were told we are not changing, yet in the next room our families were told we are changing. I think what they meant when they spoke to the people with dementia is that the essence of who we are is not changing, but we all objected to being told we are not changing, as we all felt we were – other than the people with dementia who were more advanced in their symptoms, some who had completely rejected their diagnosis, even though they turned up in their PJ’s one day!!
I am not the person I once was, many of my skills have diminished, my insight is disappearing, albeit slowly, my ability to remember the names of things and people is deteriorating, my ability to understand the meaning of words, and to comprehend things is slowly diminishing. This must be horrible for my family to watch, and especially hard for them when I refute I have forgotten something, or refute I have made a mistake, and blame them. But from my side of the fence, it is not easy to admit, sometimes not even possible to see or believe it is the symptoms of dementia that have got in the way of ‘who I was’ – and ‘who I usually still think I am’. As I lose more insight, I guess the latter will become stronger, which will make it so much harder for my loved ones. We are all more than slightly terrified of the time when I will move into the later stages of dementia!
There are now times when we can no longer have meaningful conversations, as I simply don’t understand or cannot keep up. This is sad for us all, and makes me cry. I imagine it makes my loved ones cry too, even though they don’t show it to me very often. Many times now, I simply don’t remember what we have done together either, also very sad for us all. My way of coping for now is to try and ignore this cold hard fact… I guess the time is ahead when I’ll have no insight at all, and then might become cranky especially if I am reminded of what I am forgetting.
The notion that one day I will not behave like the daughter, wife, aunty, great aunty, friend or mother my loved ones have known is incredibly daunting, and sad, and truly horrible. It is something that brings me to tears often. It is still a battle, and most days I am coping, but there are the dark times when it feels like I am not.
It seems I have written so much, I might use this as the beginning of a blog for tomorrow!
With love and hope, and the strength to keep coping as best you can. I also hope in some small way, it might help you with your coping.
Kate xox
Thank you Kate. I thought about you last night as I hit submit and wondered how my feelings might impact you.
As one person told me “If you have met one person with dementia, you have met one person with dementia.”
There are many things that I have not written about that illustrate how my parents have changed. I don’t want the behaviors they exhibit now, which are things that are polar opposite of how they raised me, to be the memory of my parents.
My parents can’t accept their diagnosis which makes all this so much more difficult. I believe they must understand something is different, but are too scared or too far progressed to be able to receive any of the support we could offer.
Hi Kay,
As I read about your journey with your parents, I suspect they have either lost most of their insight into the changes that are taking, or have taken place, or they are terrified of what is happening, and finding denial a more preferable place to be.
The stigma, especially for their age group for thishideous disease is much more ingrained than at my age (as far as accepting it, not for those around me).
Remembering them as the loving parents who raised you, rather than who they are becoming will become your greatest challenge, although when their time comes as it did for my father in law in May, your best and happiest memories will prevail.
I guess simply accepting their ‘new truth’ is all you can do, and love them unconditionally, just as you would if they had cancer or heart disease, which can sometimes also bring about personality changes. I often say I wish I had cancer, as it is so much more acceptable for others to cope with… and there is so much more support for the person diagnosed, and their loved ones.
With love and hope.
Kate
Hi Kate – Wonderful and encouraging remarks. Hopefully the writing and evangelism around this topic from both of us will help make a difference. We haven’t figured out how to discuss, manage, accept and shore up those with dementia and the care givers supporting them, but it gets better day by day.
Encouraged!
– Kay
The blow to my friend’s pride and self esteem is horrible! He will not accept that he has memory troubles, yet he calls across the country time and again to make my memory his “google.” To suggest that he might benefit from an expert opinion about his condition is to get a huge, angry tyrade, and a long lecture on how smart he is and what he has accomplished.
The business of being less than he used to be is an insult. There is no helping such a person, but because he has been my friend for some sixty years, it is very hard to just turn him away. He has repelled all his family and friends. And I stay away from him, geographically.
The grief that this gives us both is overwhelming sometimes. Like today. It was a phone call in which he said he would sell the house and move across the country to be near. I had to remind him that we would not be living together at all in the future. He was, for the thousandth time, crushed.. It’s a sickening pattern for us both. Stop the world..I want to get off…sort of thing.
God help us with our failing years! All of us. Susan
Hi Susan – I unfortunately know how you feel. :<
I went through a period of phone call avoidance, and won't hesitate to use it again if the calls get overwhelming.
What I did find in my case was that emotional responses seem to snap my parents to attention. My tears at the doctor's office when I said in front of my mom that we might have to pursue guardianship stuck with her for days. I feel like I now can see their struggle to remain independent mixed with fear around the real state of their mental health and ability to manage daily.
I might suggest you reach out to the family to tell them of the calls. I am SOOOO thankful to the people who have called us to tell us what they have witnessed. It's easy to ignore the things you don't know about. I know some families might not want your call, but I hope you will try.
God help us all now! – Kay