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LGBT Community and Allies
Guilt of a Daughter
My Mother was diagnosed with
early onset 3 years ago. My partner and I would visit and could see that she
was slipping away quickly. After repeated violent attacks, hallucinations and schizophrenic
type episodes she had to be admitted to a geriatric psychiatric ward. We
realized then we were not equipped to take care of her any longer. My
stepfather made the final decision to move her into a care facility.
We don't know why but her dementia has
progressed so rapidly. After only three years she is close to the late stages
When I would visit her in the
care home she didn't remember who I was but at least I could talk to her, get a
glimpse of my mom. I could get her to listen to music, take walks and the smile
I could put on her face made my life. After being in the care home for 2 months
when I visit she is in this zombie like state. Nothing seems to bring her joy.
She barely says two words and just shuffles around. It kills me to my core to
see my mother like this. We were always so close. The first 14 yrs. of my life
she was a single mom and my best friend.
therapist suggests that if seeing her like this is such a detriment to my
mental health, he advises against it. I know that as a care giver self-care is
just as important as the care you give to your loved one but I can’t get away
from the guilt I experience. I feel weak and useless. She took care of my older
brother and me for 14 years. She is such a strong woman and I wish I was more
like her. Every time I see her it wrecks me for days after. My work and my
relationship are hurting because of it. How do you balance it? What’s worse the
guilt or the devastation I go through when I see her? If anyone is going
through these same emotions and situations I could really use someone to talk
to. Yes my partner and therapist are great resources but it’s different talking
to someone that is going through it as well.
Also I I just wanted to say how much it means to me that there is an LGBT friendly message board. I identify as genderqueer and pansexual. My partner is trans masculine.
I haven't felt comfortable enough to go to any local support groups seeing as most of them are religiously biased and in churches. Also I tend to not be able to open up about all of my experience for fear of putting off the straight/cis gender people. That’s all I need. Going through what I am with my mom and on top of it worrying if I am going to offend or get judged for being who I am or for my partner being who he is. So thank you!!
Hello and a very warm welcome to you. I am glad you have found this supportive Message Board and I can tell you that you can post anywhere on any Forum and have no fear of bias.
We have had many LGBT folks post on the Caregiver's Forum (the most active Forum with the most input) as well as the Spousal/Partners Forum and all have been welcomed warmly with open arms. No fear here!
As to your question; that is going to be person specific so I can only speak from my own experience. My mother also entered that state where she no longer communicated or connected; it is hard, but I had to remember that she was still who she always was and that her soul was intact. She may not know who I was, but I knew who she was.
What I did, was to visit about two to three times a week; I would sit next to her, sometimes lotioning her hands and arms, and would softly speak to her about memories from childhood; Christmas, Birthdays, Halloween, Easter, how she baked and cooked and things that had happened in our lives. All positive things. Sometimes it was okay, other times I did not feel comfortable. It happens.
Each time I went in, I could speak and relate what was happening in my life, the weather, etc. (only positive things), and then I could once again go over and repeat the memories. How much she actually heard and processed will never be known, but it was how I communicated to her.
If you are having anxiety attacks when visiting, then would having someone with you be helpful?
For me, guilt would be something that would go on 24 hours non-stop, so for me guilt would not be a good way to go. If you need to take a week or two off now and then, that is okay; we all need respite. You can call in to ask how she is doing if you feel the need.
If it is harmful to your mental health and you are not able to make a visit, that does not mean that you do not care or love her. You need to do what is necessary. You can call in and ask how she is doing with her licensed nurse and also with the social worker every few days or so. You can send colorful cards to be posted on her bulletin board; she may not know what they are, but she may see the bright colors and in a way, it is your presence.
Perhaps sending a small bouquet of flowers from time to time; she may not recognize them, but it in a way is your presence within the flowers. Whatever you choose to do, it really is okay. You love her; she is safe, warm and secure and that is very good.
I would also like to invite you to contact the Alzheimer's Assn. Helpline at (800) 272-3900. If you call, please ask to speak to a Care Consultant. There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They can be very supportive and have a lot of informtion about resources in the community and can also assist in problem solving. The Helpline is open 24/7, 365 days a year.
As for Support Groups; there are many that meet at Nursing Homes with Memory Units; and I went to one that was in a church and there was no bias regarding gay members; we had a small group of six to eight and one member was indeed in the LGBT category and all was fine. You can call churches that may have a group, get the name of the facilitator and ask specific questions about that. Nothing ventured, nothing gained and you may even find a positive outcome. NOTE: Not all churches carry such bias and quite a few have a very inclusive stance regarding all people.
Please let us know how you are doing, and how your mother is. We are all here in support of one another and it is a safe place to land.
Just thinking of you and wondering how you are. This is a very difficult place to find oneself. Sometimes I felt as though my emotions were being rubbed down the side of a cheese grater I felt so "raw." That is often part of the process during such rough times. You are a caring person or you would not have any feelings about this whatsoever.
Whatever you decide will be the right thing. It is hard for many of us to forgive ourselves from not being perfect in how we manage, but there is no perfection while on this journey. There is only the best one can do under the circumstances with the challenges at hand.
Keep remembering that your mother is safe, secure and well cared for. This is a prime directive for our Loved Ones and that directive is being met for your Mom.
Hope you are having a better day today and know that no matter what, you are going to be okay. We often have to learn how to forgive ourselves and also to learn to let go. That was one of the hardest lessons for me to learn.
Sending best wishes your way,
My mom just turned 84 and is still in her home with round the clock care.
This whole process makes me feel so powerless and is filled with emotional pain like I have never felt before. The daily worry and self doubt that I am not doing enough is overwhelming at times.
She knows who I am as well as my wife, but sometimes she gets so anxious and dangerously runs around the house like a little kid - it's hard to stop her and get her to chill out.
I spend afternoons a week with her knowing that time is short
I feel your pain and guilt
Please, no guilt!!!!
You are providing excellent care. Is there anything you can do to provide socialization, other than with yourself and your partner?
Any former friends? You may have to educate them on what to do while there. Emphasize that a lot of time is not important. Her concept of time is probably minimal. Bringing old pictures sometimes helps. Caution the visitor not to preface showing saying: Do you remember? Just say: this is you and me at the ....