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Frustration and helplessness


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Yesterday I went over to my mother's place to do some laundry, wash her floors, and take care of some shopping for her. I visit her apartment a couple of times a week at least, to make sure that she has everything she needs and that the place is cleaned up to her satisfaction.

My mother is obviously becoming increasingly frustrated with her position: while her mental confusion is clearing up, probably as a result of her GP dropping the dosage on her seizure medication to account for her impaired liver function, she's getting increasingly stir-crazy in her apartment and we'll have to see what we can do about getting her out and about a bit.

Also, she's struggling with the calorie intake requirements she's under, having a hard time drinking enough Ensure and eating enough foods to bring her weight up (in fact, her weight is still dropping). This is a matter of no small concern, but unfortunately there's not a whole lot that I can do about it: ultimately it is her efforts and her determination that will make the difference. All I can really do is offer her emotional support.

She's also talking about stopping chemotherapy because she associates her mental confusion and weakness with the first round of treatment she went through. I did point out to her that in fact her energy levels increased right after chemo, and that the mental confusion was (as her own GP told her) probably a result of too much Dilantin in her system. I hope she heard me; when my mother gets an idea in her head, it can be almost impossible to get it out! Later in the afternoon she was talking about going back to chemo again, though, so perhaps my input had some impact.

It's very frustrating for me to watch her going through this process when I want to help her so much. Every so often she says that she "eats better when someone is here", but I can't be with her every waking moment -- I would have to dump all my studio projects since I can't work from her apartment, and it would destroy me emotionally (since I suffer from chronic depression myself and the stress would probably send me into a catastrophic tailspin). I just wish there was more that I could do for her, but I honestly don't see how. :-(

I'm sure other caregivers go through similar periods of frustration and helplessness. I'm her only child and there are no other relatives in the picture, so all caregiving functions fall squarely onto my shoulders. I alternate between periods of feeling able to cope and other periods of wanting to crawl into bed and scream into my pillow. Is this normal?

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Well, the helplessness is very normal. I felt that, but I will say that for me, the only thing I could do make me feel better was to make my mom feel better and that meant pulling out all the stops to make sure she was taken care of and taking care of herself.

I agree that stopping all of your work would not be healthy for you, but a few visits a week from one person seems like a lonely place to be if you are facing a beast like LC. Does she have friends that visit? What about a church family? Just trying to think WITH you here.

Hope to hear from you soon.

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Oh, I hear you!

I think you are wise to try and balance your mom's needs with your well-being as well. That took me awhile.

One thought on the Ensure: I also have a cousin who is struggling mightily with pancreatic cancer, and is losing weight rapidly. My brother started augmenting the Ensure with ice cream, heavy whipping cream, chocolate sauce--anything to add extra calories and make it more appealing. You might see if any of that helps.

I know that we are very fortunate to also have church friends, friends from school, and ladies from 'the old days' to keep Mom occupied. If there are any people you could help call in, just ffor a visit, that would be great.

Please remember that it is OK to take care of yourself. Remind me of that also, when I forget, OK?

:) Kelly

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Is there someone else that could drop in and spend some time with her? If not a friend, maybe there is an agency that could send a volunteer in to spend time with her and check on her when you can't be there. Anyone that could take her to lunch on days you can't stop in?

Carnation Instant Breakfast is a good alternative to the Ensure and tastes better. There is also a powder you can get at the health food store that is called Weight Gainer.

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Hi Prairiecrow, I think it is normal to feel guilty. Plus, our parents are experts at making us feel we should be doing more. I wonder if they are aware of their behavior or if it is subconscious.

My dad is 89 and living home alone on the farm - 2500 miles away. So I call him each and every night at exactly 7pm and we talk about an hour...sometimes more. It is hard, and I am tired from working all day but I do it for him. He likes to reminisce about old days, and I've learned so much about his life and things about Mom I never knew.

I wish your Mom all the best with her treatments.

Barb

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I used ensure and made it more enjoyable by making a malt out of it. I would put a few scoops of ice cream, half a bottle of ensure, some vanilla flavoring and a few tablespoons of malt powder in the blender and I could actually get it to go down. I was able to gain about 12 pounds during my treatment program.

I also live alone and am not real accessible to my family or friends on a very frequent basis. The one thing that kept me sane and on track and even gave me a reason to get out of a bed a few mornings when I would have preferred not to was my new puppy. He is and was the light of many of my days. Does you mom have an animal .... maybe just a cat or something to keep her company???? Just a thought it helped get me through some very tough times. I talked to my dog and cat and even cried with them on occassion. Yep I feel they knew my moods.

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i agree with everything said here but i will also add...

I also would go clean moms place and discovered I would have much rather been sitting with her or taking her somewhere. Maybe you can either pay someone or get someone to volunteer to clean a bit for her while you take her to so something. When mom was too sick to really go shop or whatever I would just sit with her ourside in the sun... she would be covered in blankets but it felt good to get some fresh air and sun on her face and just have time together with no agenda or distractions.

I know I was lucky to not have to work and I could spend as much time as I wanted with mom and still went home at night for a break and to spend time with my family.

Oh and I just thought of something my mom would eat when her apetite was at it's worst, she would eat chocolate malt o meal with some sugar and whole milk on it. Something about her generation, she grew up eating malt o meal, and she loved talking about or doing anything that she remembered when she was young.

sorry for the rambling on...

hugs for you,

Kim

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