I have been spending a number of posts on my blog sending feelings of love and compassion as well as UNASKED advice to my blogger friend Kate Swaffer. I think the reason I continue to fall in love with this woman is because she has given me so much insight into Gregory's side of this road on which we have been traveling for the last twelve years.
Perhaps I can give Kate insight into my side, the spouse's side of the road. I used to call it a path, but obviously over time it has become a bigger and bigger part of my life so it has grown from a Path into a Road. It has grown in sorrow and joy, in fear and in understanding, in love and being loved. It has grown! But I would not exit this road for any reason or temptation you could offer!
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Regarding your poem: Yes Kate fight it. Yes Kate keep on keeping on. Yes allow yourself a tear or two. But two items make me sad to hear.
ONE: YOU ARE NOT A BURDEN TO YOUR LOVED ONES!
That is like using the term "suffering with Dementia/Alzheimer's" rather than "living with Dementia/ Alzheimer's." They love you and do what they do and will need to do out of love! It just is! It just is!
Maybe I should put together acceptable language for use with those of us who live with and/or love someone with Dementia/ Alzheimer's! Gregory is not and never has been a BURDEN. It has been hard. It has been trying at times. It has been a bumpy ride. etc etc.
But it is what I do because I love him NOT because he is a burden. Would you take that part of love away from me? Would you take that part of love away from your family? Please don't. It is what it is!
TWO: TRY NOT TO BE A BURDEN TO YOURSELF.
I share my story by way of comparison, although I know my story is different especially because in my case the situation was curable. When I had cancer I lost a year. My way of dealing with it was to pull into myself, knowing Gregory was there for me when I needed it. I didn't want to be pampered, I didn't want to be hovered around. I didn't want other's sympathy (even empathy was difficult.) I hated it.
But similar to Dementia, I did have to depend of the kindness of others. I did have to slow down and take care of myself. When I pushed, I paid more than if I hadn't pushed. Over the course of the Chemo I got slower and slower, I got more and more tired, I was able to do less and less for myself.
The doctors compared the impact of Chemo to "Pregger's Brain" the reality that when a woman is pregnant, there are chemical changes that affect her thinking and sometimes her ability to function in ways she always had. The doctor even had one dedicated position in her office to help patients deal with filing insurance, paying bills, etc because of the effects of "Chemo Brain."
I share this because I hate seeing you beat yourself up. Becasue there are some things we can control in this life, there are others we cannot. Because there is a fine balance between "strenuous exercise" to work out a kink vs injuring oneself more. Because the only thing, in my opinion that matters, is loving and being loved! No matter what!
I am not saying you should "disengage from life" as you have discussed previously but rather "rearrange life" so the most important pieces are the ones you spend the most time with for as long as you are able. I would guess right up front there are your husband (BUB,) your sons, and then helping others when you can.
Here is my version of "The Serenity Prayer."
THE SERENITY PRAYER, MICHAEL’S VERSION 2009
Grant me the serenity
To accept the things I cannot change
Courage to change the things I can
Wisdom to know the difference.
Living one day at a time
Enjoying one moment at a time
Recognizing that life operates on a continuum not at extremes
Working towards balance in all things.
Holding on to the important parts of my life with all my might
While letting go of those which I can no longer hold on to.
Sitting with my pain and grief and suffering
But also letting them go while learning their lessons.
Understanding that growth in awareness is continuous
But knowing that all things are not knowable to me
Keeping an open loving heart with healthy connections
Even if loss of those connections will cause pain.
Accepting this world as it is, not as I would have it
Accepting the people around me as they are, not as I would have them.
Trusting that all things will be right.
Trusting with faith in myself, that I may be content in this life.
(Thanks to Reinhold Niebuhr author of the original Serenity Prayer.)
Many my thanks dear friend… for sharing your side of the fence, for your friendship and wisdom, and most of all, for being true to yourself, and sharing your love. Most of the time I do not feel like a ‘burden’, and my husband and sons do tell me I am not a ‘burden’ to them. My inner concern and ‘feelings of being a burned’ get when up after reading about the experience of other carers, some who even say how much they ‘hate’ caring, even though they also say they would not swap their role and they love their family member with dementia, and how hard it is for them. Many family care partners quite actively and publicly object to people with dementia telling it like it is from our side of the fence, and this makes it very hard for everyone. We [people with dementia] all 10000000% understand how much love and commitment it takes, and we appreciate our care partners, most often far more than we do or in some cases can, tell them. But reading about how much of a burden [we] are, ignites the pain and the totally irrational guilt of being diagnosed with dementia in the first place… dementia is one journey my husband and I sometimes detest, and love, all in the one breath. It has made us closer, love more deeply and openly, and look for the good in each other… it has ensured we appreciate every moment of every day, and each others love. What a gift, one that many never receive, and if it had to be dementia to bring us that gift, so what. Kate
ReplyDeleteYou are such a role model, Kate.
DeleteMIchael, so glad I found your blog. I guess many of us use the term suffering because we don't know exactly what our loved ones are going through. It just felt like my father was so miserable. Your gift in keeping Gregory's humanity in perspective was inspiring.
ReplyDeleteKevin Kirkpatrick
Thanks Kevin for your thoughtful comments. Glad you found the blog also!
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