We too often forget about the spiritual side of ourselves, particularly when we are dealing with dementia. All too often people say they "lost" their parent to Alzheimer's, even before the person has died. We think that our loved one is no longer who we once knew. In reaction to that, we might not know how to interact with someone with dementia since they seem to be "gone" so sometimes we don't interact with them at all. But if we remember that their soul, the essence of who they are, still remains, we remember their humanity.
In my theological understanding, I do not believe in heaven and hell, but I do believe in the soul. The soul as being the essence of who we are that is an energy which remains in this Universe for all time. That is why so much of my ministry focuses on discovering your own soul, who you truly are, because that helps us be happier and more productive, caring members of society. The more grounded we are in ourselves, the more we can help the world.
I believe children are far closer to understanding their soul than adults because they have not been taught as much as we have to be a certain way or please certain people. It is possible with dementia that people again come closer to their soul because they are going back to their core being.
For instance, my Mom still wants to care for people and animals. The same things, like a laughing child, make her smile. I see the essence of her still here, even if her memory is not here. She values love, relationships, and caring for others. That is who she is, and that is always who she will be. If we can see that more often, we are better able to spend time with our loved ones. We can just sit and listen to them, or if they no longer talk, we can talk about the things we know touch their soul. It is up to us to remember to see their soul through the illness.
When Mom was in the early stages of dementia, I made her a little scrapbook to hang on her wall which has photos of her in her element, with boxes of homemade cookies and her grandkids eating the cookies. It says "What you do may change, but who you are will never change." I always wanted her to know that even if she can't make cookies one day (and now she can't), the essence of who she is will always be here, and we will always try hard to remember that. I wanted her to remember that too, so she knows even if her mind is gone, her heart and soul are still here.
Blessings,
Rev. Katie
Nothing could have been more appropriate for me to read this morning. Thank you.
ReplyDeleteHi MamaK. I am so glad this helped you. I hope you are doing well this week.
ReplyDeleteBlessings,
Rev. Katie
Of all the blogs and articles that I've been finding on dementia, yours is one of the most helpful and comforting. Especially this one about the "soul". I've read a number of your posts now, and the comments underneath, and have found them to be so helpful, as I'm coming to terms with this subject and my Mum.
ReplyDeleteMy mother is now 78, lives in England, and I'm an only child, living across the pond in the US. (A nightmare for me trying to "take care" of her and my Dad, from this distance).
She has had suspected (not actually diagnosed) dementia for at least the last 2-3 years. I've tried (with the help of my husband, aunt and Dad) to take her to the doctor twice now to get a test and diagnosis done. But the NHS doctors over there have been extremely unhelpful. They have dismissed my concerns and have declared that there is "nothing wrong", which only serves to solidify her state of total denial.
She had the basic dementia test and blood tests 18 months ago, and all results came back "normal". But that is not what we see in daily life. She is deteriorating in all her cognitive abilities - memory loss, confusion, ability to perform basic tasks, etc. I have catalogued lists of the various "symptoms" we have observed. (Not just me, but a growing number of family members and close friends now).
I would consider her to be still in the early stages right now: - she is much changed and much less capable in many areas now, but she is still able to hide her dementia from the doctors and even from friends and family.
What saddens me most right now is the fact the she is very angry with me for putting her through another doctor's visit,(just recently, at the end of our Christmas visit). I tried to do it surreptitiously, but thanks to the doctor's total lack of tact or caring, she found out about the letter I wrote to the doctor and he even read some of the letter out loud to her! She naturally felt deceived and betrayed by me.
It seems she perceives me as out to get her and I'm seriously worried that our life-long wonderful close relationship is at risk.
She has always been fiercely proud - a tough cookie - and has always refused to ever admit anything is wrong with her (even in the past with any kind of ailment), so to be confronted now with this embarrassing "weakness" is humiliating for her. I understand that.
I realize that the way I have to proceed now is with great caution not to upset her any further. She is so stubborn, I know that she will never consciously confront her condition. I so desperately want to help her, but I have to do it in the way I would my children - doing what is best for her without telling her the whole picture. It is so sad because our relationship has always been based on openness and truth. Even though she has always been proud, prickly and stubborn, I've always been able to talk frankly with her about everything in my life, and her life. But now, there is this great big wall that she has erected - her denial. I understand it. It just saddens me that I can't get through this wall, and have to learn to live with it, as I learn to live with the fact that she is becoming a different person to the Mum I always knew.
Anyway, thanks for letting me get that off my chest! Your insights and words of wisdom are going to be of great comfort to me in the years ahead, which I know are going to be increasingly difficult. Thank you for sharing them, and keep up the good work!
Hi Toria,
ReplyDeleteI am so sorry this is happening with your mother and your helping is getting in the way of a good relationship. After a while, she may realize what is happening and your relationship will repair, it just seems so scary at the time and you wonder what your relationship will be like in the future. Our loved one does change so much with this disease and we are often left processing that change and what it means about our relationship now. I keep trying to see my Mom as I know her in the midst of her not always being the same person I knew. It's hard. Just know there are people to support you. I am glad the blog helps. You can also contact your local Alzheimer's Association and look for caregiver support groups. You are a caregiver no matter where you live.
Good luck to you!
Blessings,
Rev. Katie
I have been looking after my mum now for 13 years i have seen the Alzheimer's come on over a period of time and it is very hard to see the change in mum. she has gone from a lady who word in childrens homes who looked after my dad when he was ill, to a lady who can not walk , can not wash herself, can not feed herself, is incontinant, and does not remember anybody or anything. She calls me her mum and my husband dad most of the time, It is so difficult watching one of your loved ones go through this change i think it is one of the crulest things on this earth. but once in a while i see my mum she will say something or give me her smile or call me a silly sod just sometimes she is there, But watching your mum lay in bed shouting mummy is so hard. she is now on oxygen on a night because in january of this year we nearly lost her the doctor said she would not be here at the weekend they brought oxygen out to the house we had already put her bed in the livingroom so i could be with her 24 hours a day i sleep on a sofa bed in the room with her. Anyway she was put on the oxygen the doc phoned the next day and asked how she was when i told him she was sat in her chair having breakfast he hadto come see for hiself he could not believe it. i know take her out in her wheelchair twice a day and she can now hold a cup i have to hold it with her but she is trying but funny enough she can still hold a bun and know how to eat it my mum is 90 now she witll be 91 in march i don't know how much more time i will have with her but even if sometimes she doesn't know who i am i will spend all the time i can with her and she will always know how much i love her and i just keep telling her so she will never forget.
ReplyDeleteLynn