Hi everyone, I have been reading a lot on this site and gotten a wealth of information so far. I appreciate everyone who posts and answers so much.
I was wondering if anyone has resources or thoughts on accepting the changes of a loved one with dementia.
My mother has Alzheimer's. She seems to be forgetting me before others. We used to have a friendship/relationship, but she no longer calls, texts, etc. I understand that she is going through a disease that she cannot help. I'm sad and grieving the relationship we used to have.
There are other people in her life that she does still call, text, listen to and remember things about. My niece for example. (Her granddaughter.) My sister. Her sisters. Her former neighbors. People she used to work with 25 years ago. But she doesn't call me, and when I call her, she goes on at length about the minutia of her day and all the details about everyone she talked to recently, but she doesn't ask me questions or even leave space for me to talk. When I squeeze in some details about my life, she can only listen for about two sentences before she changes the subject back to herself. So she doesn't know anything about my life. She doesn't know or care that we used to have a friendship.
I know she has a disease. I know she can't help it. Intellectually, I know it. I have a lot of sympathy for her. I still call, visit, bring food and help with things in my parents' lives.
However, I just feel really sad that it's her relationship with me that seems to be disintegrating first. I feel abandoned. I know it's not on purpose but it is still so sad and hard.
So I'm wondering if anyone has a book recommendation or some words of wisdom or other ideas that will help with grieving, processing and accepting these changes.
You can Google “meditation for acceptance and letting go” and will find quite a few guided videos and also written ideas. One simple one is meditating on “May I be at peace with the changes in life.”
Therapy could also be helpful.
And think to yourself what do you wish you could hear your mother say to you? That you are her darling daughter and she will love you and be with you forever? That she is so proud of you, and so grateful to you? Say whatever words mean the most to you to yourself, remembering some wonderful feeling from the past. You can be your own mother now in this way.
My husband, too, has a form of dementia. It's not a progressive disease, but he suffered considerable brain damage as a result of a stroke at the age of 53.
I have mourned, his sons have mourned, the loss of the man we knew.
I'm sure this isn't what you want to hear, but my first thought is,
it's not about you.
I know, that sounds harsh!
It's what I found myself thinking when my stepson and daughter-in-law went to visit my husband in the nursing home 9 years ago, and called me to complain that he wasn't being nice to our daughter-in-law. So, she was out in the hall crying, and texting me, while her husband, my stepson, was in the room, arguing with his now brain damaged dad.
My thought then, was, it's not about you. If you go to visit, it is for the patient's benefit. He doesn't know any better. He has suffered brain damage. If you are going to visit to make yourself feel good, it probably won't happen.
Really, I am so sorry. This is very emotionally challenging for you. But, she is not the same person you remember. Her mind has been replaced by a vague resemblance of who she once was. And the fact that she shares minutia of her day and what she remembers of the day, it is because, deep down, she knows you are someone close. You are someone she can trust to share these things with. She may act like she doesn't know who you are, but she is showing that you are someone very close to her.
If this is causing you distress, I urge you to seek counseling with a therapist. You are grieving the mother you wish was still here. Unfortunately, she no longer is.
She still remembers to tell you about her day.
As I said, it's not about you. Just continue to be there for her. You don't know what exactly she remembers and thinks of your part in her life. As you acknowledge, she has a horrible disease, robbing her of her precious memories.
Don't expect anything from her. Just continue to be there for her.
Stage 1 - denial - the feeling that this change is not happening
Stage 2 - anger - the feeling that this change isn't fair or shouldn't have happened.
Stage 3 - bargaining - trying ways - usually ineffective - to make things go back to the way it was before the change.
Stage 4 - depression - the sadness when realize the loss is permanent and mourn what is lost.
Stage 5 - acceptance - finding peace and going on in the "new normal" of life with the loss not hurting
Does she live in memory care? If so, you may visit her there, perhaps with her supervision. Hold her hand for comfort if she will tolerate that.
Do you have other relatives and some friends? It's time for you to move on with fun in your life since your mother's condition will only get worse with time until she passes away.
After my mum had her stroke, I was the only person she couldn't recognise. I had been closer to her than anyone else. But, her strongest memory of me wasn't as a woman in her early 40s, but as a girl.
Yet, she recognised my daughter in her early twenties, and all our other friends and relatives who had changed over the years. Just not me.
She became angry with me for saying who I was when she asked - she told me to stop lying to her. Yet, she didn't ask for her daughter either. Well, once, but then forgot about me.
It hurt, but I realised that brain damage doesn't follow any rules - there's no rhyme or reason. I would still be a loving daughter, even if she didn't recognise me.
It didn't last, but she never really cared about me and my life again. She got good at going through the motions, when she wasn't really taking anything in. Others were fooled by the act, but I could tell when Mum was faking.
I learned to take it in my stride and to look towards other relationships. It's important to see ourselves reflected back at us from a person who knows us well*. That's what you are missing from your mum, as well as missing her.
(*However, I would also caution that should also be someone who truly cares about our wellbeing. That need is why so many people go back to abusive relationships, whether friends or romantic partners.)
I tried turning my relationship need to my friends and husband (getting more like his dad and not as huggy) and found, no, that didn't work either. I have always had a strong God connection and THAT is the relationship I can always depend on. I have done more "independent" things since having to handle all the financial aspects for my parents. I am enjoying my dad and his team right now, including 4 caregivers, 1 in-home nurse, 1 PT, 1 sister of another mother.
Depression or sadness or abandonment creep in and I remember that I am grieving. I give myself permission (and a time limit) to breath (literal deep breaths down to the tips of the lungs actually located very close to hips) AND grab a VERY GOOD memory that I have and savor it. Then move on to the next task. I continually pray and know that what blesses one blesses all; I CAN continue and "radiate happiness" (I have a T-shirt with Snoopy and that saying).
You will find your own way through this and the next.
I tried turning my relationship need to my friends and husband (getting more like his dad and not as huggy) and found, no, that didn't work either. I have always had a strong God connection and THAT is the relationship I can always depend on. I have done more "independent" things since having to handle all the financial aspects for my parents. I am enjoying my dad and his team right now, including 4 caregivers, 1 in-home nurse, 1 PT, 1 sister of another mother.
Depression or sadness or abandonment creep in and I remember that I am grieving. I give myself permission (and a time limit) to breath (literal deep breaths down to the tips of the lungs actually located very close to hips) AND grab a VERY GOOD memory that I have and savor it. Then move on to the next task. I continually pray and know that what blesses one blesses all; I CAN continue and "radiate happiness" (I have a T-shirt with Snoopy and that saying).
You will find your own way through this and the next.
The Thirty Six Hour Day
by Nancy L. Mace, MA
and Peter V. Rabins, MD, MPH
Dementia Care Companion
by Mehdi Samadani (He is a member of this group as a caregiver)
Get a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon for a better understanding of mom. Its a dreadful disease and very hard to watch our mother's fade away and become strangers, or worse yet, toxic human beings saying foul things to us. My condolences on what you're going through.
Some of the attendees meet afterwards for coffee and socialization.
There are also virtual support groups, ranging from dementia to mental health.
I have also experienced a focus on my dad’s (92 w/ dementia) life and needs. After we talk on the phone, I feel good that I am able to offer him what he wants, but later I feel drained because it was a one sided conversation.
When that happens, I have to remind myself that it is his dementia talking. And I have to look for other ways and people to receive a more fulfilling relationship.
You are not in an easy situation to be in. I hope you find what you are looking for. Sending hugs.
You are missing relationships and friends because you haven't made any.
That's on you.
It is time for you to find a hobby, a book club, a social outlet in community of faith, a group of knitters or quilters or an art class, something that interests you in the wide world. Trips to museums.
For some reason you have remain enmeshed with your mom's life in a way that isn't working for your own health.
I would consider a good cognitive therapist for a few sessions to explore goals in your own life and how to attain them. I wish you the very best.