As an ALS caregiver, has your social life changed?

[Dagmar]

November is Family Caregiver Appreciation month.

Has your social life changed? What are the best ways that others can show their appreciation of you?

[Kanesius]

My wife was diagnosed with ALS in July, 2023 and the symptoms really became evident after her back surgery that was done in March, 2023 to relieve pressure on an impinged nerve. Shortly after the surgery, she needed a walker and then a wheelchair a short time later. I’ve been the only caregiver at home and I am working on getting assistance from Medicade. You don’t have to be on Medicade to get this assistance but it is taking more time than expected as it goes through the approval process.

Our lives have changed greatly since the diagnosis. We spend the majority of our time at home since it has become more and more difficult with transfers particularly when transferring from wheelchair to car. Once in a while we invite friends over but my wife gets fatigued after a couple hours. We used to go out all the time but now we are in bed by 7:00pm. Our family members live out of state so getting help from them is not possible. Friends and neighbors have offered their help but we have been managing on our own for the most part. I don’t expect things to get any easier but I promised my wife I will always be there for her.

[Eddie]

I am having a hard time. My wife was diagnosed last November. It’s been a hard road for both of us. Stopped working to care for her and seems friends do not get it. My wife is having a hard time and so am I. We seem to be all alone.

[Kanesius]

You are not alone Eddie. See what I wrote above. Stay strong!

[Gideon]

My Dear friend

I am in the same boat with you

The family just running away doesn’t help at all

PS They are very Wealthy and don’t even offer to help with Medication or stay by their sister to help her husband.

My wife broke her legs when she tried to get up she could not stand on her feet, She is a Bedbund.for 3 years.

My kids are just Waiting to see me and her dead so they will get the Inheritance

My older son Came here to visit with his wife and they got the nerve to tell me what furniture You want”

I told him your Mother and I are not dead yet. what’s wrong with this Generation, They don’t give a crop about the Parents

Friends don’t even understand the need or the Situation, just don’t call anymore ( Try to explain what is ALS, but no one understands)

Tired, fade up, sleep less, in the house 24/7, and on top of all I am Disabled.

Sad Sad

.

[Barbie]

I have no social life as a caregiver.

[KICO]

<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”> una ocasión lei esta pregunta y al cuidador quien lo cuida? en esos momentos comprendí que era importante apoyar a quien realiza esa importante función y comprendí la necesidad de cuidar al cuidador, porque luego es en el que menos se piensa o se atiende. </font></font>

<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>soy cuidador de tiempo completo, y en esta situación en un principio me aleje de todo contacto social, pero ahora estoy retomando mis amigos, un mensaje en la mañana , una oración, una llamada de teléfono por la tarde me hace sentir bien y si yo estoy bien tendré la fuerza para continuar a mi esposo.</font></font>

[Vio]

Hello everyone, my sister was diagnosed with ALS four years ago. She has a four year old daughter and had to leave her job. She has been taking riruzole alongside mestinon and other medications to help with symptoms relief. We live in Uganda located in East Africa in subsaharan Africa. The drug Riluzole is not available in the whole country for almost six months now and she has not been taking it for some time now. Is there a way you kind members here can help and see to it that this drug and other necessary drugs get to us as soon as possible. And even needless to say, we have run out of money to purchase the necessary drugs needed . We don’t have access and availability of these drugs here in Uganda. This is a cry for help to anyone out there who feels they could help.

[Dagmar]

Vio, have you tried contacting the group ALS Worldwide? https://alsworldwide.org/