The last vestiges of Dignity have gone.It is milestone for me.
I went to stay with a friend for a few days.We went for a walk on my scooter.She made me laugh.
The inevitable happened.
I got in the bath but I tried desparately to get out of the bath.I couldn't get out so after a long struggle I had to call for help.My friend had to heave my naked body out and wrap me in a towel.
What have you found undignifying about this illness.My husband is the only one to help me dress.
I have been offered carers but I worry about my dignity.
In my case it has been also difficult with bathing or taking a shower, have been very weak after my release from the hematological ward in Feb 2009. i got carers and most times i liked their assistance. one carer - all were woman - was indiscrete to me. For such a carer you should safe an extra parcel of energy in advance and immediately call the service center. The others were nice and they liked so much to assist me, that they are unhappy now, when they have to come again because of my accercerbations, that i don`t need them for bathing assistance..
i lost my dignity somehow when i was in psychiatry in 1981, but this has not been Ataxia (maybe connected with some genetic mutation.)
In 2009, after my hospital release, i fell down in the bathroom. It was during the night. In my self-carelessness i had not taken my alarm-bracelet with me. This was left in my room, 10 meters away. So i had to robb on my belly - i could not come up to my knees - to my alarm-bracelet. There i caused alarm. The alarm center was reacting by calling my brother who lives nearby. Then my brother came to my appartment and safed me. At 1 am. It was sort of being in an emergence situtation. What would have happened if i would not have been able to reach the alarm-bracelet? i had no diapers or such things. Ashaming the imagination of that. It was too much for me, the supposedly beginning ataxia and cortisone therapy, also with sleeping aids (they forced me to take) and having spent the whole day in my hospital bed (except 1/2 hour of PT and 1/2 hour for lunch, maybe washing with assistance)..It lasted for one hour till i reached the alarm.
Margarete
P.S.
In this time i was living completely alone. My appartment mate joined later..In the meantime i got more muscles
Hi Marie - I’ve only been diagnosed for 4 years, and have had a few portions of humble pie…and am pretty sure that I’ll complete a baker’s dozen if not more.
Depending on my abilities, I try to focus on what I’m still able to do and like to think that the best is yet to come -maybe naive, but good in theory- currently, I choose to see my Ataxia as less severe, although I’m sure that some would disagree, certain experiences that challenge my dignity and sometimes make me cry and miss everything that I used to do in seconds without thinking and now can take me hours and sometimes days, make me lean toward and into what’s inevitable and surrendering to that.
If you use a scooter and lose charge in a store in the middle of the underwear section, and you have to ask for help. And while waiting for a jumped ride, strangers give you the oh-so-familiar-to-me-up-and-down and sigh under their breath “lazy” - is a portion of my humble pie that, yes, makes me want to scream that just because my face looks normal and I’m not overweight and otherwise look somewhat “healthy”, I, do, in fact, have some issues-so buzz off(put in these terms here to keep it Rated-G) and don’t judge-happened to me twice so far, btw-but not both times in the underwear section…luckily, it wasn’t the feminine hygiene or the birth control aisle.
I have aquried Ataxia and have had a stroke. I to look"normal" in my chair. Until I need to go to the loo for a wee,and require the use of a stand aid because I can’t walk, I have an Ilostomy which I can’t empty or change. I know the carers at the home don’t like doing it so I wait until im busting. I have to have help shoWering. People see me naked and don’t consider how I feel. I thought I lost all dignity having a baby but this is worse.
Thanks for the response.My rollator went out of control several times in the underwear dept of Mand S dragging with it several racks of knickers and other garments.As you say it coulld have been worse if it had been in the feminine hygiene or propophylactic aisles.We have to see the funny side of things to keep us sane when we keep losing skills.I have eaten several portions of humble pie.At least we still have our sense of humour even though it is sad.Well done you for focussing on what you can do and not what you can;t.Wish I could get to that stage but still stuck in the past.
With you on the seconds.Life seems to take me hours.Lots of rolling around on the bed trying to be a contortionist to get my clothes on.Not a nice image.
Hi Marie,
At the moment I rely on my husband who is a Parkinson’s patient, mobile, and his greatest difficultly is slowness. I some how manage my showers and as everything is kept ready on my bed I slowly manage to dress. Two days ago I had a fall while walking and sprained my ankle. With mental strength and exercising, I do not know whether dignity will be with me or not? I am slowly training my mind for the worst! I cannot help my husband and I do not know how long my husband is going to help me! Let us stay strong and come to terms with our ailment. We will have to preserve our mental equilibrium for survival. My hugs to you. Stay strong.
Try not to be so hard on yourself. You have a disability and are doing the best you can! I think it's wonderful that you even went to visit your friend...,kudos to you!!! And remember, a true friend loves and cares about you, even if you needed help out of the tub. I use to feel bad that I took so long to walk anywhere, as with my cane I'm soooo slow. I found myself apologizing to whoever I was with. One day I was with my best girlfriend. We were getting out of the car (takes me forever) to walk into a store. I apologized to her for my slowness. She said, "you don't have to apologize as I understand and will always be here for you". That made me realize a true blessing. My friend cares about me and loves me in spite of my disability of ataxia! I do understand about preserving your dignity, as the human part of us wants to retain that no matter what! Due to my ataxia, I have some urinary incontinence. I recently had surgery for this and although it's much better, I still have a bit of a problem. Anyway, it takes forever to get to the powder room and that's caused me grief at times. That's my most "undignifying" problem about ataxia. Hugs to you...
Just last week I had a moment with a date. I couldn't talk. I could not get the words out. Then I could not walk. He had to carry me. .I know that had to of been one of the hardest things you had to do. But try not to be so hard on yourself. As they say at least it was a friend. She knows of your difficulty. But still we all know the feeling of loosing our dignity. It is so so sad. And like everyone says. Eating a lot of that humble pie! Let me know how that seminar goes. Take care and try to be strong!
I'm 27 and live on my own in London. I started using carers to help me get out for work of a morning about 4 years ago. It was exhausting me and often fell so knew I had to do something about it to carry on. Initially, I still did it all in bathroom to maintain my dignity but eventually it got to much and I needed assistance getting on/off the shower seat. Since then I've moved flat and now get hoisted onto a shower chair.
What I've learnt is its hard to make to make that intial step but you get used to it after a while (I used to be a very private person). What you have to remember is:
1. Carer's are used to it so will treat you with dignity
2. Needs must! - I realised to continue my life, I had to have help getting myself ready otherwise i would be rather smelly ;)
Not all carers treat you with dignity. They have a job not a vocation.we do as much as we can,and every step is an achievement. If only we could we would
That's great that you're still able to work! And I agree, carers are used to whatever they have to do, so no need to be concerned about your "dignity". I admire you for realizing you needed carers to, as you say, "continue your life". Good for you! Your strength is to be commended!!! ;o)
Hi Kim, you are right. Especially in caring homes etc. where your freedom is restricted, you are in risk of bad treatment. But a single positive person - could be a patient - sometimes is able to turn a bad atmosphere into the opposite.
Hi Marie,
I have had times when the changes that Ataxia brings just feel unbearable. The other day I was sitting in the driveway on my walker, waiting for the medical transport people to come pick me up for an appointment. I waited and waited, and they never came. I called the transport people and found out that I never ordered the ride. So I was a no-show for the app’t, again. Not the first time this has happened. I also have had trouble with incontinence while out in public, yuck! But my mother taught me so much about dignity; she had severe ataxia at the end of her life, and was able to accept help graciously. To me that is dignity. I have so much compassion for others and would never judge anyone with a disability, but I have a harsher standard for myself, and I really want to learn more compassion for me. There’s a wonderful book called “Tuesdays With Morrie”, and it deals with the loss of function issues. It is helping me to look at life differently, and to let go of what was more graciously. Maybe some day it won’t be so hard. Hang in there! And thank you for sharing these feelings with us. You are not alone.