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Dear Bookworm and Granonthego,
I wrote a couple of weeks ago about the guilt I feel when I must leave hospice and Mom is brokenhearted, remember? And if I should go to San Fran for 5 days, remember? Anyway, yesterday I did not go see Mom. I was not feeling well and I was in such a bad emotional state that I needed to stay at home. Well, I called Mom at hospice and she was so very hurt and sad that I did not come and was waiting for me all day. Then she said she couldn't eat because I was not there. I broke apart. Now I have the extra burden to carry that if I do not see Mom one day, she will not eat. I cannot carry this burden, but I must, must I?
Brother is going to San Fran first week of Nov and now I was re-thinking that I need to get away, but now with this new heavy burden, can I live with myself there in San Fran and even have a good time and eat at great restaurants there? Will Mom not eat for 5 days if I go? Will her emotional state be so bad by not seeing me for 5 days make her illness worse by not eating and her physical condition worsen greatly? I realize that no one can answer these questions for me, but I would like some input on what you have to say to this new burden that I must carry. Is it really a new burden? Is it my responsibility to make sure Mom eats because of me? Will she starve herself because of me? Now I am in worst shape than I was in last week.
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I'm so sorry for your struggles. Mom was diagnosed with Alzheimer's/Dementia a little over 7 years ago. We recently moved her to a NH because Dad's health was declining so fast. It was a difficult decision but we were all just so exhausted and worn out we felt we had no choice. The guilt is always there ... but knowing she's getting the most excellent care possible makes it tolerable. Regarding you having given up your cycling, it made me realize something. I think for many of us, we give up the pleasures we have because theirs have been stolen from them and we feel we don't deserve them if they have lost theirs. I don't comment on many discussions because this journey is so very private and denigrating (for the patient) that it almost feels deceitful to write about. But truly, these comments/posts have helped me keep my sanity the last few weeks. Keeping you in my heart and prayers.
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Dear Bookworm,
Just wanted to tell you that I re-read your questions to me for myself should I decide to go to San Fran with bro. It truly helps. I must re-read it and answer the questions honestly from my heart. I feel already that some answers are more stable than they were last week. But I just posted another question about Mom and San Fran. If you could please read it and respond to me I would be very thankful.
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Hi Lefaucon - I am sorry that you have not been able to resolve this question as yet, and are in such turmoil regarding whether to take the time out for yourself which you know you need in order to carry on with the burden you carry but seem unable to give yourself permission to do so. Have you considered the end result of pushing yourself to the nth degree for her? There are dire emotional and mental consequences if you do not look after yourself properly. My sister developed a type of dementia in her 50's that is caused by prolonged stress, which is the reason we are caring for her. My doctor has cautioned me not to allow myself to get to the same point. Looking after yourself is the number one priority in looking after your mom.
Ask yourself whether you are allowing yourself to be manipulated by your mother. It sounds to me that she is playing you like a violin. Is she in control of ths situation or you???
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Hi Lefaucon, it is now close to your trip. Your mom is still going strong (in the sense that she is not literally at death’s door.) As I read your latest 2 posts, this is what popped in my head:

1. I felt so bad that your mom waited all day for you. And maybe her mentioning that to you is a reminder that next time when you are unable to come, to please call her and let her know that you’re not able to come. There really is no need to Tell her WHY. You’re an adult, and your visits to her are Not Mandatory. You are doing this out of the goodness of your heart.

2. Your mom is still in good condition, and not at death’s door. So, I think you can go on your trip. If it assuages your guilt, you can call daily but keep it to a minimum. Don’t stay too long on the phone – limit your talk with her (because she will try the guilt trip again.) If the first time you call and she just overdoes the guilt trip, maybe you can call your sister and ask her of your mom’s status – for Your Peace of mind.

Lefaucon, I almost did not visit this thread. In the future if you need my immediate attention, please click on my name, and leave a Comment on the Comment box saying, bookworm, I left a question on the More Than Just a Caregiver. Or you can send me a HUG and leave the same message.

I usually visit New questions and rarely go back to the ones I’ve answered from. So, by dropping me a note in my Profile, (which I check daily), I will know to come here and check it out.

My father is very good at making me feel guilty. But it always balance out because he turns around and says that I’m a Bad Daughter. So, one day, I feel guilty, and then the next, I’m so angry with him because out of 8 kids, I’m the one here helping them. Please understand, this has been going on for 23 years!!! Are You Really Wanting to Put Your Life on Hold for that Long???? Your mom is in a facility that will care for her. If she doesn’t eat, she’s only hurting herself. Plus, I’m sure she must have sneaked some food in her. Have you ever tried Not to eat a whole day? My stomach would hurt so bad, that I’m forced to eat. (I tend to forget to eat, but my stomach reminds me.)

You need to harden your conscience. You have done so much for your mother. Way more than your other siblings. Don’t you think, you deserve this break? Everyone who has a job needs vacation. Well, you also need one, too. (I took my vacation – 14 days away from this island. I felt bad but …. I needed that trip! And I enjoyed myself. Not once did I call home because to call home would make me feel guilty. I knew that I had several relatives whom I paid to help out my father. I did my best to cover their care, and I took off! Of course, I also knew that if mom had died when I was on vacation, I would have felt bad. But, mom didn’t die!) I hope this helps you! HUGS!!!
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