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 would advise You to get out now because you are feeling so miserable and as a result of this you make your Mom miserable too. Think back to when you were a Child and how your Mom adored You ? now is your chance to give your Mom back some of that love.
First my father was the difficult one because he would become belligerent, but he is in hospice care and sleeps most of the time. My mother is the difficult one now because she is always criticizing or complaining about something I did or didn't do or about the caregivers. Each day there is some new issue I have to deal with concerning my mother's behavior. She is also very hard of hearing that makes having a simple conversation next to impossible. I don't hug her or kiss her. I am very business-like in my dealings with her. This reaction surprises me because I thought I was a caring person.
I find it hard to see them every day get frailer and needier. I ask myself, why do I pull back? Maybe it is because I am forced to face my own future--a slow, agonizing, undignified end. Because I realized that I alone was inadequate to meet their needs, I sought the assistance of caregivers who come in seven days a week. I know my parents are safe, clean, and warm, and have a wonderful team who take care of their medical needs.
Deep down I know I love my parents, but I don't like to be around them. I ask God to give me strength to deal with this situation because it is not what I had envisioned when I started out on this journey.
I will admit I have yelled back and I block his blows. I feel disgust because the only other person dealing with him is my mom. My siblings are ghosts. His sisters, and cousins are part of his fragmented memories. He cries allot because there are brief times he realizes what is happening. He wishes he could go back to his country. He wants his mother and then he wishes he were dead. He screams how he wants us to kill him. These screaming sessions last about 45 minutes. After he gets tired, he just calms down. I give him a hug and sing his favorite song. Sometimes he welcomes it and hugs back and there are times he brushes off my hugs, but I do it anyway. I try to remember the number of times he would carry me from the back of our 1979 Yellow Honda Hatchback to the house after a long drive from New Jersey to Delaware. He did his best not wake me or my siblings, but he always did it. So I give a hug to remind me
mother does not have AD, I know exactly how you feel. And you aren’t the only one feeling this way - it’s so very hard watching them fail a little every day.
It is hard to explain to others how she is passive/aggressive, wants to argue and bicker about everything. She tried to play my brothers and I
against each other. A hug? Never. An occasional “thank you” or acknowledgement of something positive? Nope.
I feel so bad that the mother I cared about, shopped with, visited is gone and this person who is here had no interests other than tv 24 hours a day. But, she can’t follow the plot or characters.
I guess I want my mom/friend and it is hard to accept that she no longer extents.
Their doctors told me they needed to be in an adult family home. I found a good one about two miles from me. Medicaid pays for Mom being there, and my Dad has enough income to private pay for staying there. They are together, and happy.
Get your Mom's doctor to write a "prescription" and recommendation for her to be in an Adult Family Home. It's much better than a NH.
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.
of.
That said, caring for a not-all-there elder is not easy. Like other's said, there's
no reciprocation (may never have been any before). They are going to deteriorate,
not get better. And their demands can seem almost continuous.
At a facility, there is a small hoard of people caring for one senior. There are
activities, library, etc and other distractions. You are it, and it's overwhelming.
Look for ways you can have other help in home. And be careful to take very
good care of yourself. Being around demands for constant care, negativity
and deterioration of your parent is incredibly draining. Be careful to put your
needs first when it comes to nutrition, sleep, exercise and socializing. If you
can't do this at home, then a facility would make more sense. Best of luck.
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.
The hard part is figuring out how to build into your life relationships and activities that ARE satisfying and nourishing to you, despite the enormous drain on your resources your mother presents. Its easy to become isolated in a caregiving role where one unsatisfying, overtaxing relationship becomes your total reality. Can you get at least an afternoon of respite care for her once a week to do something totally for yourself? Visit a friend, browse a shop, sit in a coffee shop and read a good book, go for a drive, anything that is not totally about your mother? It might change your perspective a bit and help you feel OK about treating your mother like a job, which is essentially what she is at this point.
remarks. I think you are right. I think we do need to “detach” to some extent or the emotions would be overwhelming.
We (my sister and I)have been talking about assisted living. I know my mom feels my negative emotions even when I try to hid them. I don’t want her to feel abandoned but, I think assisted living staff would be more patient and tender with her. These decisions are so hard, but thank you all again.
It also is a strong group that provides a support for me. I can feel awful when I hear I some stories. I wonder how that poster can possibly survive what their situation is. I imagine my life without having to meet all my mother's needs which I haven't expressed in detail here. That makes me feel bad. Yet I don't love or even like the present. It all cycles around and my brain gets foggy. Hope I answered you.