more transition for me
 

My muscles haven't improved and I can no longer transfer myself from chair to bed,etc. My family was helping as able, but it was too hard. I considered hiring an aide for 24 hours. I finally decided to move to an assisted living. I call when I need help to bathroom etc. They help me dress, shower. I have lunch & dinner in the dining room. It's overall a good place, but certainly not like home.

I don't know if I'll regain muscle strength to go home. There's no therapy here, just a seated exercise class each day which I will attend.

I am at least 20+ years younger than my other acquaintances here and I'm so out of my peer group and already feeling mentally and socially starved. I have nice little one bedroom apartment. I can read and watch TV, but I also need to take up a hobby or two.

Meanwhile, we all continue in this struggle to hang on to this wonderful life. Blessings to you all.

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Pam please know that you are in my loving thoughts and prayers at this time.

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Hi Pam,
I am sorry to hear about the issues you are experiencing moving about.

I hope your adjustment to your new living arrangements go smoothly and you find a hobby that brings you joy.

Being the " youngster" there, you could always get into some mischief!

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Pam - I am so sorry to hear about your struggles. After I read through your signature line, I was blown away about how much you have already been through. Your are such strong woman and pray that you continue to gather strength to overcome these obstacles.

Jessica

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is there any way you could get home health therapy?

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Oh Pam, so sorry for what you are going through and what you already have been thru. This cancer sucks big time. Seems like we do well for a short time then get kicked in the ass again. You hang in there, and be well, , Jeanette

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Pam,
Perhaps folks on the board can speak up about you might be able to get some therapy at the assisted living location. Anyone who knows or who has had similar experience - please speak up. I am sorry I don't know about this issue.
K

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Pam, I like the mischief part suggested. I wonder if you could combine a hobby with a bit of mischief...would provide smiles. I wish that you could have skipped this ordeal, girl. You are doing what needs doing I'm sure. I send you love and prayers and a huge parcel of joy to lock away when needed. ma

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Pam,

I spent a lot of time visiting nursing homes in our town from 1987~1991 and later at my Mother-in-law's nursing home in the late 2000's. After 1991, all nursing homes were required to have a certified activity director to coordinate the daily activities for the residents. Almost all the participants were in wheelchairs and I remember some of the fun fnger/arm/leg movements I learned there. (I've also watched a lady teaching similar activity on PBS.)

Quite a few of the residents were younger-aged patients who were there for rehabilitation. When you feel up to it, try visit some of your neighbors - all the 'older' residents love to have visitors and I learned a lot from them through their life stories.

And don't be surprised if you see someone at your dining table dozing off in the middle of the meal...

Sending you love and smiles...

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Dear Pam -

Knowing how hard you have tried to remain out of this new situation, maybe it will turn out to be a blessing in disguise. I am surprised there is NO physical therapy there.
Maybe your doctor can order it and you can get visiting therapy a couple times a week.

I imagine there is a special van to take you to treatment?

Bed exercises can help, but for the legs you really need a professional to assist you with the right movements.

All the best, and I hope the food will be satisfactory. (That was one my mom's main complaints - I had to cook a steak and bring it to her!)

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Dear Pam,

I'm sorry to hear of this development. I hope and pray that you find the help you need to get stronger.

Know that you are loved.

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Pam I'm so sorry of your inability to regain muscle strength - surely as Steph said you can get some therapy arranged?
I wish you well and pray often
Jenny xx

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Pam,

I think I missed what caused your muscle weakness. I had the best physical therapist in the world. I was soooo weak after chemo. Resting wasn't helping. But my physical therapist put up with me bitterly complaining for 60 (yep - sixty) 2 hours visits. He was a trooper!

I hope you find an angel like this to help you. My grandmother-in-law once removed had a visiting therapist.

I also want to hear about what mischief you can get into to!

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Hi Pam, a hobby would be good. Sending prayers

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Pam, definitely follow Jackie's advice about the activities going on in your residence - There usually are all kinds of things like crafts, choir perfomances, bingo, movies, guest speakers etc. etc.

It's nice you have your own apt. with TV etc. At least you can get help when you need it.

all the best
caya

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AS the others have said, it seems that activity is essential if you are to get strong again. Explore what else is offered. And since you need a hobby, make it getting more exercises into that place!
Mostly, keep the faith. I know you do.

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It's so frustrating not to be able to do things we once did so freely. Pam, I hope your move and experience at your apartment turns out to be a very positive one. And I hope and pray for your increased strength and wellness! Hugs, Joanne

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Pam -

I can't imagine how odd and discouraging
this must feel. Do you like the care there?

I got unbelievably ill last April. I realized thru
that process I will need to find a place to go
when it's that time for me. I'm not at that point
yet, but will be visiting a place soon to prepare
for next steps. Unfortunately, those around me
could not manage my situ and I found it too much
to "manage" other people to help me when I was
so very ill myself. I hope you are getting some relief
to be on the receiving end of good care.

My experience in April taught me how this
can turn on a dime very, very quickly.

Kim

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Dear Pam,

I wish you weren't going through these hard challenges with your health and I imagine the move was a tough decision. If I lived nearby I'd love to come by with flowers from my garden and home cooking and a nice cheerin' uppin' visit and get to know you better. You seem like a very nice person. :)

I hope you don't mind--I'm not "telling you what to do" but going to brainstorm a bit with you with some ideas for you to take or leave--maybe there's a suggestion that possibly you can use.

Have family members/close friends gotten out the word that you'd love visitors (if you would)? Sometimes a few phone calls will get the ball rolling for people stopping by for a visit.

I echo what many have already said: can you look into insurance coverage for a PT and perhaps an OT coming to you? Surely your doctor can perscribe that for whereever you are.

Meanwhile, what do you think of setting some reasonable WRITTEN short term and long term goals for yourself (physically, personal growth and development, and beyond) and tracking progress?

One possible idea for starters in getting stronger while you are waiting for a PT Rx from your doc would to be to go on line and see what kinds of PT you can do on your own in bed and in your chair without assistence--starting slowly right wherever you are at and making progress from there.. Some PT tutorials come complete with video demonstrations. Even a few minutes several times a day can make a real difference.

What do you like to do for fun that fits with your present physical limitations? There are on-line courses, tons of cool stuff on the internet to learn...Are you a reader? Do you have music going? The window open for a breeze and to listen to the birds and a wind chime your family puts out there if you like that sound before winter hits in MN? ;) Is there a spot for a bird feeder/flower pot you can see outside your window? Do you have the things you enjoy most from home within reach and view?

Is there a spot you can be wheeled outside for some fresh air and sunshine for awhile every day...maybe bring a good book and your phone (to chat and be able to get ahold of staff to come back and get you when you're ready) or invite a new friend to go with you? Is there a meeting place where people gather?

All us Her2 positive sisters care about you, Pam. (((Big hugs from all of us who are huggers to you))). Take courage, friend.

Paula

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Paula, you should be an activities director! Or a cheerleader! Lots of great ideas there.
Keep the faith everyone.

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Pam,

I have always found the elderly to be among the most interesting and inspiring of people. Mind you they will tell you exactly what they think, but that is refreshing. I certainly realize this is not the situation you ever expected to find yourself and I feel for you, I truly do. All I can offer is that many of those ladies love hobbies and are very good at them, even if a bit mentally challenged so often the fingers will still nimbly thread the needle to embroider or flash those knitting needles. Life brings so many changes and seasons. I am proud of your courage and all that I know you will find to give to those around you in your new environment. You are a true gem among us. I am confident you will bless and be blessed. Bloom where you are planted....

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Oh Pam I'm hoping and praying you regain your strength real soon. Gods blessings to you sweet woman. My Aunt went into assisted living just about a year ago for dementia. Two of the other ladies their I thought they worked their were always helping with baking classes and bingo day and most of the time spending time with the other residents after first six months I asked how long they worked there and they said we don't we live here. They said they wanted to live some where they could stay busy! You sure have been given so many great ideas here from your fellow sisters, that I can't wait to hear what your knew plans will be. You have always been a great inspiration to all of us. Look forward to your next Post. Peace Little Sis!

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Know that we are here for you !!
There are stretching exercises you can do yourself from your wheelchair and exercises to improve curculation in the lower part of your body. If you have access to a transfer shower bench you can learn to wash your body parts-----perhaps one new body part every few days.
All those will improve your strength eventually. Maybe you can get some videos or DVDs of seated exercises to watch and follow along when you have time. Even something that does not seem like a big exercise can help rebuild strength. Don't let anyone tell you there is no hope !!!!!!!!!!!
I had a back injury which not only fractured my back, but caused nerve damage the beginning of July. I was in the hospital most of the summer and very weak after I came home. I rebuilt most of my strength myself a little at a time. Today I climbed over the wheelchair twice --once to let the visiting nurse in after she couldn't figure out how to unlock my door with the key I gave her before she went to her car to get something she forgot. !!!!!!!!!!!! I guess I am getting stronger.

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Pam,

Please let us know how things are going for you.

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Thanks for all the suggestions and encouragement. I’m trying to get adjusted here. I’ve been here for 2 weeks today. I finally got some furniture – I started out with a card table & folding chairs.

The meals are good; the people are friendly. I don’t qualify for any more physical therapy according to insurance. I do the seated exercises on my own. But I need to do something else to get my legs strength back to standing/walking. I’m still trying to figure out how to get help for that. There is an exercise group here weekdays. It’s really just stretching but I go to that too.

Some frustrating things about being in assisted living. Example: Nurse told me I couldn’t wear compression socks (which I bought at a drug store after the surgeon suggested it) since I didn’t have a doctor’s order on file for it! I promptly got an order faxed. Another nurse said I should have a schedule for when I need to use the bathroom (7, 11, 3. 7, 10, for instance) for their convenience I suppose. How ridiculous – I need to go when I need to go. I asked him if he peed on a schedule. Hard for me have anyone tell me what to do!

Emotionally I’m doing okay but I miss my home, family, pets etc. Thanks, Laurel for asking how I’m getting along.

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Sounds like they could use some sensitivity training there! Who ever heard of peeing on schedule? I understand their position, but really....they are there for YOUR convience. Times are changing and often people are in care facilities for a short term and the old treatment approaches dont fit the new profile. Maybe your mission is to keep notes and suggestions from your perspective for them to consider. Later. No need to piss them off too much while you are there.
Have you considered keeping a journal? You could write your observations and concerns. As well as visitors and greetings you receive. Things you might clip from magazines, that sort of thing.
Keep the faith!

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Hi Pam, Of coarse I know nothing. When I was on bed rest a long time ago. I used a rocking chair to rebuild my calf muscles and it sure helped a lot. I just happen to love to rock. I don't know if you have access one? Just a thought. You have been through so much already I wish I could help in some way. Gods blessings to you my little Sis, Nancy

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Pam,

I don't know what your financial situation is, but is there any way you or your family could pitch in for a consultation with a physical therapist? He or she could perhaps put you on an exercise plan that you can do in your room, perhaps with elastic bands or some kind of weight and pulley device. Then, finances permitting, maybe there could be follow-up every so often.

I can't imagine being told I have to have a bathroom schedule. That is outrageous. What did the nurse say when you asked him if he has to pee on schedule?

I like Nancy's rocking chair suggestion.

Hang in there.