My mother’s personality, behavior, and hygiene has changed so drastically from who she was, I know it’s the disease behind these changes but I feel so empty when I think of her and it scares me that my memories of her will be tainted by dementia.
She’s in a good care situation, which I’m blessed we were able to find, but I’m struggling with my mom, not being my mom. Is it normal to have these feelings?
I think of it as being like the view of a mountain range. When you are close, all you can see are the foothills. As you get further away, the foothills seem to shrink down, and what you see are the high hills behind them. The high hills are your memories of the past, and they are much much bigger and more important than the little hills that block your vision of the big picture while you are still so close. Have courage!
She developed slight dementia not long ago.
She has suffered with Parkinson’s disease for quite a while. It’s a brutal disease.
No matter what the disease is, it is hard to see a parent changing before our eyes.
I don’t see how our feelings can stay the same when our situations change so drastically. Our parents become an empty shell, that they once inhabited.
It is especially hard now for me now.
I visit my mom in hospice. I look at her. Her eyes are closed. Her mouth is wide open.
She’s completely non responsive, yet I tell her that I love her.
I pray beside her bed that she will have a peaceful death.
I am grateful that she is pain free and being cared for with compassion.
A part of me doesn’t want to lose her so I can continue to speak with her about so many things, yet I want her to be free to join my father and brother in heaven.
I understand that you are struggling with your emotions. So am I. Many of us are.
I am glad that we have each other on this forum to share our thoughts and feelings.
You know, I thought that I would be relieved after watching mom suffer endlessly, after being exhausted as a caregiver and so on, but this is hard too, the lingering, waiting for this life to end.
I do find comfort knowing that she will soon embrace her new life with my dad.
I should remember how this feels from watching my father die, and my brother die, but I suppose each time it’s a bit different.
bundle
I have been sad and embarrassed by my mother's physical state for years. She is overweight. When she was in AL she would gravitate to the same tired clothing even when I would buy her new and comfortable clothing. It was painstaking to get rid of a very tired looking top that showed great signs of wear. I would take certain items home to try to get rid of set in stains. I was secretly overjoyed when one particular sweater she wore constantly went missing. Of course I had to go out and find replacements but I could stop seeing her in this same stained worn out piece.
Now my mother is in a NH basically immobile. I wish for the AL days. It has all been made so much more difficult because when she became more ill I had not seen her or had been to her room for 6 months due to Covid. A number of items I know she had went missing and I was not allowed in to clean out her room due to Covid.
Regarding mental states there are continuing new normals down the ladder. I just try to find the little positives but I do find it all very depressing and find myself just asking why this is all happening at such a slow pace and where I can find any inner strength. I know she can never see my home again and that makes me very sad.
There are other situations in my life that are stressful and I constantly find myself asking God for some relief. I have to constantly remind myself about the positives in my life and hope to derive strength from them. I just wish there were some more positives to take some mental weight off. My mother's condition is a constant sad situation to always have to come to terms with.
The hygiene is an on going touchy issue, in moms other life she was always well groomed and meticulous about her looks and dress. Now she’s verbally and physically aggressive about being bathed, and more importantly changing her depends. It’s been a battle but she is now being bathed at least weekly.
for taking time to share with me I definitely identify to what you said about thinking of memories of who my mom was, to the new person she has become. This is a disease that affects all involved.
As noted, what you're feeling isn't uncommon. It could be a form of self-preservation, an aspect of the grief noted above. The quote is from an article, Dementia Grief - What Makes It Unique? (www.dementia.org/dementia-grief-characteristics)
You are basically dealing with a new person. Meet that new person as you hold on to your memories of the person who's gone. You'll be alright.
I have found that as time moves on and your perspective continues to change, your memories of the person recover - the dementia doesn't loom so large, you remember more of the person in earlier years. And, I suppose, as you get older yourself, you begin to understand something more of the young adult your parent was before you were even thought of!
Yesterday I met a new client, recovering from sepsis but also - under investigation - possibly affected by dementia. We are to prompt safe mobility and ensure that he does not move around without his walking frame and the Assistance Of 1 [person].
His favourite book is "Memoirs of an Infantry Subaltern" by Siegfried Sassoon (very battered copy by his chair). He is an accomplished pianist. The point is that having something to talk to him about *apart* from his frailty and his unreliable memory makes the bedtime routine far pleasanter for him. Then he's less apt to feel patronised if you point out that using his walking frame will make it much easier to balance while he's putting his pj pants on.
For you, while you're going through this journey and you really can't see your mother for the dementia - because it's all much too close up - try drawing on other parts of her life. Magazines, photograph albums, news stories could give you topics of conversation that are totally unconnected with her daily care needs now, and allow you a few minutes in your real mother's company :)
Hugs to you.