For over 6 years now I’ve cared for my 94 yr. old mother with dementia for six months out of the year. My sister has her the other six. I’m a widow, so being alone, I can’t even go to the bathroom without hurrying for fear she will fall. Even though she is legally blind and has hearing loss, she can still shower, dress herself, watch tv, carry on short conversations and get around the house. She is a fall risk and needs the constant supervision and attention similar to what a four year old would need. My home smells and looks like a nursing home a lot of the time. We have daily battles about small things that come up, like throwing her garbage on the floor, sticking her chewed gum all over the place or losing her teeth in her pockets somewhere or throwing them away wrapped in her napkin. She’s angry with me a lot of the time. Seems nothing I can do makes her any happier.
When she is watching her show with her “tv ears” on, sometimes she will cry and talk to my dad saying she wants to be with him. She will cry about all her limitations and the loss of her independence. I think when she has her tv ears on she feels like no one is around to hear her. It’s a regular thing that happens.
I feel bad. I don’t go over to hug her. I do cry a little when she’s going through that, but I don’t feel close to her anymore. I try hard to be soft and caring with her, but eventually it just turns into stress and frustration. Our relationship is just “do my job, take care of her/ battle with her”. I realize a lot of it is my attitude and perception but it’s difficult to shake.
I feel terrible that I don’t feel the urge to hug her and
I feel like I have a cold heart. Actually, most of the time
I just feel numb of everything around me.
I’m I the only cold hearted one out there?
I have been caring for my father 24/7 who is progressing in dementia. For days now I have mourned the loss of my empathy. Of my caring. Of my joy. I battle every day with just plain not liking who I have become. I totally understand I am now dealing with dementia, not my dad. But where’s the “me” I used to know? Where’s the “me” that used to be? And will she ever come back? Pitiful that so many of us are experiencing the same destruction. But thank God we have each other to lean on.
I hate this disease. It crushes the soul. Call it holiday sentimentality, but, “God bless us, every one.”
You're giving her space, and it seems like she's confessing all that weighs on her heart, and the best thing to do is listen.
If she asks you questions about you and her(or even about herself) answet honestly.
I understand your guilt but being present is all she really needs from you right now and youre doing your best.
i've been my husband's caregiver for over 1 1/2 years. I don't think that you are a terrible person or that you have a cold heart. I'm not going to tell you what to do, but let you know that I've got the same feelings towards my husband. I'm sending you healing energy. Peace, dawn1947.❤️
Hugs not drugs!!!!!
Know that you are not alone. Many of us who have been trapped in this never ending saga of caregiving for someone with dementia feel the same.
But, I can say - I can understand.
I can only really say that I will forever miss the hugs, smiles, and the happy on both Mom and Dads face when I entered into their home. But this was before the disease... the disease sort of took our happy life away.
But I will say if I could do it all over again with my Mom... I would be so patient, kind, and loving. Have you ever seen someone in the grocery store because it is apparent they are there because it is shopping day for Mom and Dad??? I miss those times. It was every single week for a long time even before the final diagnosis. I miss the doctors visits too. I'd go with Mom and Dad for my Dad's appointments because Mom was starting to show problems. We couldn't have even imagined she had Dementia... but she did - we just hadn't gotten there yet.
All I could say is to try really hard to understand. Patience and Love.
I do feel badly for you, I do... but your Mom, she cannot help this.
Hugs to you
Sure the warm fuzzy feelings towards her may be no longer there, but she has a roof - a bed - food, etc. that YOU provide for her. You worry your head off over her welfare night and day in that in many ways you are the 'mom' and she the child.
Love is a choice, not always a feeling. You are VERY loving in choosing to watch and care for her for six months at a time- doing what is right, as it were. Frustrating? Indeed. Resentful? Indeed - probably on both sides. Exhausting? Indeed. Numb? Indeed.
That does NOT mean that you do not care... it simply means that you are burnt out and are in need of of refreshing. That is not selfishness! Hardly...
Honoring our parents isn't giving them whatever they demand or expect. Honoring them means doing what is right for them -even if that it is safer care at a rest home, for example. Providing somewhere safe, food, clothing and medicine is honoring to mom. It might not be at you or your sister's homes. Providing that might mean at a place better equipped for mom's needs. Everyone has limits - and that is not something to be ashamed over. An aging woman with your mom's needs is VERY challenging, much less to take on yourself as the primary caregiver at your age. (No offense intended.) She would be angry at anyone who cares for her - her dementia warps and clouds everything. It is not personal, so to speak. ( I am a nurse with long term care experience... it is challenging for anyone! ) You are indeed NOT neglectful. You are a very good daughter - when many others in your shoes would have thrown in the towel long ago and never cared for her at all.
Is there any way to get some kind of respite care for her, and more importantly for yourself? (Even for a few hours a week for someone to watch her while you get out, or just have some time to recharge your batteries?)
Can you ask her doctor for help or ideas for her care and welfare/ safety recommendations (and for yours) ? It is worth a call.
How about area aging counsels? They might have options that you do not know exist to help mom and/or you.
Is there a way for her to qualify for going to a place of care full time - so you and your sister don't have to carry the whole burden of her care? She must be qualified for medicaid, I would think.
What a test and challenge you are going through. My heart goes out to you.