Need an ear or two.

[Guest Frantastic]

I haven't signed in for a while, but am glad I did and read a few posts: I was feeling quite sorry for myself. A little perspective helps.

Monday of this week, Mom started losing her ability to swallow. She'd been slowly going downhil: not speaking clearly, very confused, gradually eating less and sleeping more. Tuesday morning the nurse put in 2 butterfly lines so that I could inject the two most needed meds, Hydromorphone and Haloperidol. She had been taking a slew of heart meds for years, but figured they were'nt necessary at this point.

Late afternoon Tuesday, she says that she better start eating. She requests an orange and has a few small bites. Today, Friday, she had ravioli, juice, fresh fruit with ice cream and a small piece of apple pie for lunch, eating at the table. She also wrote a short letter to one of her friends. This evening, she wrote another note and read the paper, which she hasn't even shown an interest in for months! And now here I am whining again, thinking about having to plan more complex meals again!

Because she had been doing so poorly last Friday, we had 24 hr care in the home for mom. I wasn't even sure she would last out the week. Now, we can't afford to have as much care here, but I'm so burnt out, that I'm not sure I can handle looking after her on my own again. My back hasn't adjusted well to sleeping in a different bed and I can't seem to wake up during the day. (I have fibromyalgia.) Do we accept the next available bed even though we know that mom would rather die at home?!

It's also been hard for me to be "up" for the personal support workers and I miss just hanging out here on my own, doing my own thing (as well as helping mom). I haven't been coping too well and hope that writing down my feeliings here will help. I know that I need to get my feelings out, but I'm not entirely sure what they are. I think I feel a little left out, and never sure how much to help the support workers - whether I should stay or just plain stay out of their way. I could go to my house, but I'll probably just sleep and I can do that just as well here.

I should be overjoyed that my mom is feeling so much better. However, I'm not sure how to deal with it after preparing myself for the worst. I guess I should accept it and make the most of this "second wind" . She really is in the most wonderful mood.

We want to cut down on the amount of support hours, but I get frustrated trying to figure out what is best. I need help transferring her and she's still using her commode. How can I predict when I'm going to need that help? Mom has "Depends", but that's just for accidents. Is it humane to expect her to just go in her panties? When her legs were stronger and I could help her, we just had a support worker coming for an hour in the morning and an hour after dinner.

I'm glad that mom is thinking clearly again. I had a chance today to talk to her about her care and needing to make some changes. I was able to talk to my brother a little bit too, but not as much as I would like because the support worker was right there.

Well, I better get myself to bed and get some sleep. Thanks for listening!

F.

[ErinC1973]

Your mom is quite the survivor! She reminds me of my mom, with breast and then lung cancer. I see your mom had a BC recurrence. My mom had BC in 1999.

My mom also needed help transferring, she was wheelchair bound from polio. She had lived with us since 03. My dad died of LC in 1999 and she could no longer live on her own so she moved in with us. I have had two back surgeries so the extent of my helping her was limited, and she had someone coming in to help daily, but it is REALLY hard having a stranger in your home all the time. My mom was also pretty depressed to have to have help from someone like this. We came into a great position where my best friend for 19 years quit her old job and came to help out with my mom. She didn't ask for a lot of money, her main concern was that my mom got the help she needed. She also was a great help to me, too--I have twins and a newborn and she helped with them, cleaned my house, took my twins to school, whatever I needed when she wasn't helping my mom. We were EXTREMELY lucky. My mom was comfortable with Robin and I was, too, of course. Plus it gave me someone to talk to.

Do you have anyone, anyone at all who has time available to help out for a lot less money? Sometimes people might be able to tweak schedules to help out a couple days a week, as long as they know ahead of time. If you can get a schedule together far enough in advance it may just work out. We had family meetings and among all of us, my mom got all of the care she needed. She was never really very sick, thank God, but she still needed care regardless. She went to dialysis three times a week for three hours a day and for chemo once a month and she would stay the night for three days. She had lots of doc appointments and therapy appointments and needed rides to these places. We all made it work. I hope you have some family/friends that can help out. You do need to sit and talk with your brother and get any other support/help that you can. When people say to let them know if they can help, take them up on it. I was on bedrest for four months while pregnant and am now recovering from my c-section and this whole time we've had family and friends volunteer to take my twins to school or out to play. We took all of them up on it, and now, 5 weeks post-surgery, we've not had to rely on any one person too often to be much of a burden.

I hope you can come to a decision and get the help you need. Much love and luck to you.

[Don Wood]

Glad to hear your mom is better. Please do post when you need to vent -- helps you get some stress relief. Hang in there. We're here. Don

[NancyT]

I feel so much for you reading your post. So glad your Mom is doing better! It is so overwhelming, the up's and down's.......my Dad is in the same exact poition right now. Last week I thought we would lose him, I struggle as you do constantly wondering if I am doing the right thing. Please take care of yourself, you are a wonderful daughter

NancyT

[henesey]

Same exact thing has been happening with my MIL. last week she was declining , this week she is eating like a trucker and sitting out enjoying the sunshine.It is very confusing sometimes. Sorry, I am no help but lots of prayers will be going your way.

[J.C.]

F.

You are sorting your feelings and writing

them down here is a good place, you will

get the stories of people that were in

situation quite similar to yours and that may

help.

You are also feeling that you could do more

but that physically you may let her down.

The crisis is over and she is feeling much better,

that is what you could enjoy now, just look

around for some halp, any volunteers in your

town, women from her church that could help you with shopping, cleaning a load of washing while you

look after your mother.

Look in the newspapers in the help section you

may find somebody that has a few free hours

during the week and would accept to help you

for less than you are paying now.

Best of luck and some prayers with it.

Jackie

[kamataca]

Glad you could come here and get out whatever feelings you have. When I read the line, "I know that I need to get my feelings out, but I'm not entirely sure what they are," that summed up how I feel at times. This process doesn't follow an easy-to-read manual, but at least we have each other.

I think the idea of enjoying her second wind is a good one. Doa and say what you want to, and enjoy each other's company.

One last thing: remember to take care of yourself! You are so good to your mom, but you won't do much good if you get too run down.

Keep us posted.

Kelly

[Don M]

It is nice that your mom is having this "second wind".

Maybe you could get a tempur-pedic pad for your mattress. I have one on my bed and it helps my scoliosis lots.

For my brother's final days, we had home nursing care about 3 hours a day, 3 times a week. Medicaid paid for it. The family members would take turns attending to him the rest of the time.

I hope the rest of your time with your mom goes smoothly and is full of peace.

Don M

[Maryanne]

Thinking of you sweetie and I have been sending prayers to your mom for peace and to be pain free.

You are a wonderful daughter and she loves you so much. Just be with her as much as you can and make some memories with the time she has left.

So sorry you are going through such a tough time.

We are always here for you.

Maryanne