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?
It's all the more difficult for us when that parent has become difficult to deal with.
Sometimes, you just need to "do what needs to be done" and not worry about how you feel about it. Been there, done that.
The problem is it is extremely difficult to switch off one set of emotions and not the other, nice, cuddly ones.
I take my hat off daily to CW who recognised in good time what was happening and found a good solution.
I don't think I did spot it in time. Not to mention, I don't think I'd thought the whole scenario through in advance. In retrospect I can see how ugly things became, but at the time I ploughed on regardless.
What happened then (apart from the damage to other relationships) was that I went through anger, dislike, blame, guilt, disapproval and all points between, until medical and surgical events intervened and turned my caregiving job from an emotional support-based project to a clinical needs-based project. Then, with things that really needed doing to focus on, and much greater understanding of what was happening to my mother and why she behaved in some of the ways that were most infuriating, a lot of the frustration fell away and gradually the love and compassion returned.
Not to mention finding AgingCare. It is hard to explain how immense a relief it is to discover from other people who really know what they are talking about that you are not alone, not evil and not losing your mind.
I'm still not sure how much longer I could have continued. Even once I'd weathered the worst of it emotionally there were still the physical and mental exhaustion.
Anyway. The point is, that you are *not* cold-hearted, you are coping with an unbelievably stressful situation. Possible solutions include:
regular respite breaks, of some hours weekly and one or two weeks every three months or so;
delegation to paid services, whether that's care services as such or ancillary services such as house cleaning, laundry, grocery delivery;
activities to share with your mother, such as singing groups, reading groups - anything you can both enjoy in company;
local caregivers' groups.
Have a look at what's on offer around you. Your Area Agency on Aging and your local library are good sources of information.
Most of all, be fair to yourself. You are not cold-hearted, you have not stopped loving your mother. You are a person coping with an overwhelming workload, of which she is the primary cause - not to be blamed in any way, but that's the fact.
How you feel inside is one thing. How you act towards her is a thing that you do have control over. It is called being mindful. Or fake it till you make it. That is also, survival of the species behavior. The fakery and unconditionally kind, patronizing vocal tones, fake smiles, etc. are all the glue that hold us all together in hard times when we really want to tell a person off, or dump on them. But, We do have the power to fake a smile, lend an arm, hug a person even when we want to run away. Or yell at them.
No, you are not a cruel or cold person. You are normal, and trying to survive the nightmare that is your reality with mom.
When parent sare caregivers of adorable kids, who grow up to be their own people, it is a hard task but there is an ending , hopefully a good one. But the end of life care is a nightmare with no waking up until death. No wonder we close down, and shut down inside. It is just so hard to bear.