[Gabyunbound]

I will soon be the sole caregiver of my mother when she moves into the development where I live in less than a month. She has advanced MS (is in an electric wheelchair, though can do much for herself), COPD and an aortic aneurysm. I will be getting her some homecare, but she insists on only a couple of hours a day. She prefers to be alone.

I know that my life will revolve around her. Get home from work, check in on her, do whatever she needs, go to bed, rinse and repeat. I already have a small life (very few friends, none here, and I only moved here a year ago) and it will become even smaller. I've wanted to expand my life, my social life especially, but thought I had the time to do so, which now I don't.

My mother has just gotten to the point where she needs a lot more care, so I'm moving her right by me. My brother lives 25 mins away, but has no time to help. Or he does have some time, but will not be spending his little free time helping with her. Or so he has made clear to me.

My question is this: has anyone been in this position before (being the sole caretaker of an ill parent)? And if so, how did/do you deal with the stress and the lack of time for yourself? Do you have any suggestions or strategies as to how to keep your sanity, as to how to have a life at all outside of taking care of your loved one?

Thanks.

[gris212]

I can relate a lot. I wasn't the sole caretaker but I was one of the main caregivers for my mom for the longest time. She's also bipolar and would get manic episodes very often because we couldn't find the right medication. When she was bad she would get real angry, wouldn't sleep and we couldn't leave her alone home.

It was a lot of stress on my family especially me because it messed with my mental state. I never knew how the day would go. I cried often. I vented to friends even though I felt they didn't really understand. I tried to take care of myself and give myself some me time like going to a movie alone, getting a pedicure.

Things will be hard but please remember self care. Try to do something for yourself every day, even if its just treating yourself to some ice cream.

I do hope your mother's okay.

I don't have much advice but wanted to offer my support

[Wild Coyote]

Bless you for caring for your mom.

My mother lives with us. She has had a few surgeries and prolonged complications. When she is recovering from surgeries, I have been the sole caretaker. It's a tough job sometimes. Yet, I love her and wouldn't have it any other way. (My siblings are not interested in helping out.) She needs a bit of help with lots of things everyday.

I have to set aside time for myself. I have to be very firm about this.



WC

Sole caregiver is hard. Really hard. I don't have the same situation -- not a parent (not gonna happen), but my BF after spinal surgery. That didn't heal right, so supposed to go in for second one sometime soon. And a spell of every 8 hours for 6 weeks antibiotic infusions. Earlier on he was far more dependent (and will be again soon). We're at the year mark so far. No friends. No local relatives.

Will the caretaker be taking her to appointments or do you need off of work to help her (or can she manage herself on that)? I hope your workplace is flexible with that.

The only way to make time for yourself is to insist on it. And like WC said, be very firm about it. Think about what you'd like to do for yourself from the bigger things to the little and make a list. Maybe carve out a chunk of time on one or both of your days off to do them. Also, trying to be mindful can help --like getting tidbits of refreshment in the midst of ordinary things.

[Tucson]

I had been the 24/7 sole caregiver to my mother with dementia for about three years. I would consider giving yourself alone time every day, such as going into your bedroom, closing the door, relax, and perhaps play some music and read a book. This does not have to take long. You need to try to take care of yourself as best as you can. You may not be able to plan on anything social, but I imagine you can invite others to the home from time to time.

Your mother will eventually get physically worse. You need to plan for this. How long are you going to try to keep her? What will have to happen before you need to find a placement for her? Will you quit your job to continue the care of your mother? Otherwise, who will check in on her until you get back from work? If necessary, who will take care of her during the day? Can you afford to hire a person for this? If you will eventually need to place her, how would you go about doing this? You need to plan ahead. Oh yes, kick that brother of yours in the you know where. Do not tolerate him doing this to you. If you need to, and you need to have time away, drop her off at your brothers with little notice, and let him deal with it as a responsible son. What is he going to do? Kick his own mother out of his house?

You need to be able to eventually represent your mother legally, so in time get her to sign a well written durable POA that you can use on her behalf. Then you can take care of all of her business for her. This helped me allot, even in ways that I did not anticipate. For instance, when I was burnt out and needed a few days away, I was able

I can give you more ideas, but I hope these suggestions of mine can help you.

[*Laurie*]

Originally Posted by Wild Coyote

Bless you for caring for your mom.

My mother lives with us. She has had a few surgeries and prolonged complications. When she is recovering from surgeries, I have been the sole caretaker. It's a tough job sometimes. Yet, I love her and wouldn't have it any other way. (My siblings are not interested in helping out.) She needs a bit of help with lots of things everyday.

I have to set aside time for myself. I have to be very firm about this.



WC

You are an angel on earth.

[*Laurie*]

I was my mother's primary caregiver from the age of 8 (seriously) until she died when I was 42. Ah...should not have started this post.

I hope your mother is appreciative of your care.

[Pookyl]

My hubby is my sole carer. Over the past few years he’s progressively looked like an old man. We’re only in our 40’s so have in theory many years ahead of us. The future looks scary and I try not worry.

[Gabyunbound]

Originally Posted by Innerzone

Sole caregiver is hard. Really hard. I don't have the same situation -- not a parent (not gonna happen), but my BF after spinal surgery. That didn't heal right, so supposed to go in for second one sometime soon. And a spell of every 8 hours for 6 weeks antibiotic infusions. Earlier on he was far more dependent (and will be again soon). We're at the year mark so far. No friends. No local relatives.

Will the caretaker be taking her to appointments or do you need off of work to help her (or can she manage herself on that)? I hope your workplace is flexible with that.

The only way to make time for yourself is to insist on it. And like WC said, be very firm about it. Think about what you'd like to do for yourself from the bigger things to the little and make a list. Maybe carve out a chunk of time on one or both of your days off to do them. Also, trying to be mindful can help --like getting tidbits of refreshment in the midst of ordinary things.

Actually, she won't be able to get to her appointments by herself. I'm trying to find a caregiver who has the time to take her to appointments and to doerrands. My work schedule is pretty flexible, but since I'm a casual/freelancer, I don't get paid if I don't work.

But she will need me at some appointments anyway, because she's terrible about giving her medical history, asking questions, and remembering what happened afterwards.

As has been alluded to, I know it's very important to set boundaries; with my mother and myself. For example, I need to get to bed very early because the night meds I take necessitate a great deal of sleep. At least my mother is very aware of this. She will only agree to a couple of hours of a caregiver a day and yet, she not only needs help with her own stuff (bathing, doing light housework, etc.), she needs help doing errands and going to appointments, which takes more hours for a caregiver. But at least I could take her the supermarket (also so she gets out) on weekends with me and do my own grocery shopping at the same time.

It's going to be very very hard. My brother -who won't/can't help- says I'm resentful of him. I insist I'm not. But I am... I need to work on my relationship with him and try to let go of the resentment, or we're not going to get along and my relationship with him is very important to me.

Thanks everyone for all your support.

[Gabyunbound]

Originally Posted by Tucson

I had been the 24/7 sole caregiver to my mother with dementia for about three years. I would consider giving yourself alone time every day, such as going into your bedroom, closing the door, relax, and perhaps play some music and read a book. This does not have to take long. You need to try to take care of yourself as best as you can. You may not be able to plan on anything social, but I imagine you can invite others to the home from time to time.

Your mother will eventually get physically worse. You need to plan for this. How long are you going to try to keep her? What will have to happen before you need to find a placement for her? Will you quit your job to continue the care of your mother? Otherwise, who will check in on her until you get back from work? If necessary, who will take care of her during the day? Can you afford to hire a person for this? If you will eventually need to place her, how would you go about doing this? You need to plan ahead. Oh yes, kick that brother of yours in the you know where. Do not tolerate him doing this to you. If you need to, and you need to have time away, drop her off at your brothers with little notice, and let him deal with it as a responsible son. What is he going to do? Kick his own mother out of his house?

You need to be able to eventually represent your mother legally, so in time get her to sign a well written durable POA that you can use on her behalf. Then you can take care of all of her business for her. This helped me allot, even in ways that I did not anticipate. For instance, when I was burnt out and needed a few days away, I was able

I can give you more ideas, but I hope these suggestions of mine can help you.

Thank you so much for all of this wonderful advice.

I don't have time to reply to all of it, but will just say that I have no idea how long she will need to stay here (luckily, she won't be in my apartment; I got her an apartment in my development, just a walk's away. But I am looking into assisted living, have been for some time).

As I say, she will start with only a couple of hours a day of home health care (that's all she will accept) but will need more. I'm hoping that she will realize this soon. I can afford it, I just need to find someone, and more than anything, convince her. I usually work 7 hours, have a 45-60 min commute and, as I've said, need to go to bed very early. That leaves very little time for her. She just needs more homecare. And I think I'm going to have to accept that I'll be getting less sleep.

But at least I'll be able to go home at some point in the evening and have that alone time, at least until I go to bed, which would likely be very soon after getting home. But I'll have my own place and that's such a privelege.

I definintely do not plan on quitting my job to take care of her. Can't affford it, and I would go MAD. I would lose it. The idea is to get her more and more homecare.

Anyway, gotta go, but thanks so much for all of the advice.

[Tucson]

I almost lost it with my mother. I came very close to going IP, the last one being over thirty years ago. Just my raw willpower kept me out since I needed to be there for my mother. She became out of control. Of course I had to change her diapers which was uncomfortable and difficult for me. I had to wipe her in the front, you know where, into her personal part. A very terrible experience. She bit, scratched, kicked, and hit me. She even threatened me with a pointed knife several feet away. She had fits of rage. She would walk around at 2 AM, one time trying to eat a bottle of shampoo, so I had to get up. I had to find solutions to all of this. This did not help my stress very much.

The last year was a nightmare. Substantial depression set in. Everything seemed out of control. It would take me sometimes four hours to get myself moving. Every time I woke up, I dreaded the day wondering what was going to happen next. Then the other shoe fell. She was no longer able to stand up from her chair. Extraordinarily difficult to change her diapers. I could not afford to place her in any place little alone a nice place. I was thinking of making her a ward of the state so they will pay for the placement. I really did not want to do this. I was going crazy and did not know what to do. I had no one to help me much at all. But I did eventually find a good solution to all of this. I ended up feeling relief. My mother was then very well cared for. Then a couple months later, she was having seizures and then passed away.

It became so difficult to function toward the end that I was missing meals to make for her, and able to change her diaper only once a day, which is not good. I then called hospice. Her arms were almost right down to the bones. This shocked me. I felt so bad about this. I still feel really bad about this. I feel I have done something terribly wrong.

So I know what it is like to come very very close to losing it. I was numb for a year. Only then did I start to feel anything for my mothers passing.

PS I did have some help from Medicaid. They sent people over for a few hours each day to do nothing but babysit my mother. Once my mother threatened one of them with a knife, they no longer came,