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Fitnurse

New member
Joined
Apr 17, 2017
Messages
2
Reason
PALS
Diagnosis
01/2016
Country
Uni
State
OH
City
University Heights
I'm a 65 year old single male living alone with ALS. I was diagnosed in February of 2016 but the symptoms started a year before that. I'm in an apartment close to two siblings who work but come in to see me often, and I have a good friend nearby who comes by daily. I am wheelchair bound, cannot use my legs much and still have good upper body strength. My ability to speak, chew and swallow is diminishing fast lately. I have made all final arrangements, advance directives (no life-sustaining efforts), body donation to Cleveland Clinic where I once worked as a registered nurse, now retired. Living alone with this has made me very creative as to how I manage to accomplish activities of daily living. Just wondering how many others out there are living alone with ALS.
 
Welcome, FN. I am sure some in positions similar to yours will chime in. Kudos on planning ahead and thereby reducing the burden on those who will support you at the end of life.

Best,
Laurie
 
I lived alone for over a year after my diagnosis. I really don't have family so a friend and I bought a condo together that has enough room for a caregiver to come and go and it gives us both privacy. He's really not my CALS but it is so much better than living alone. I can still walk around the condo and do all personal things. I have a lot of pain so cooking is pretty much throwing something in the crockpot. I order my food from Organic Prairie and Vital Choice and buy local organic produce.

My friend loves my dog and he will keep him when I'm gone.

Right now I'm doing a remodel of the master suite which is where I sleep. I bought a accessible van and will have to depend on friends to drive.

One thing that helped is I started a Lotsa Helping Hands web site. It gives friends the opportunity to help me with things like driving to doctors. I also hired a wonderful lady for $12 an hour. She cooks, does laundry and runs errands. She comes every Tuesday and said she is willing to do more hours when necessary. She will learn my equipment. I also found a man who has an organic garden and prepares paleo meals. He delivers them on Thursday evening and the price is reasonable....much cheaper than eating out.

It's hard. I know two other PALS who are living alone and it's not something I would want for anyone.
 
Welcome - though of course sorry you have reason to be here.

Congratulations on being well prepared. Look forward to getting to know you. I expect some of your tips and tricks will be helpful to all
 
Thanks for all the replies and information. I've been silent for awhile due to a period of increased weakness and fatigue. A bit better this week. I contacted my local hospice agency this week. Although I'm not ready for inpatient hospice care, being set up with this agency now affords me access to some of its homecare services to help me out with tasks. Plus, when I do need inpatient hospice care at the end, I'll be registered which will relieve my family of this task when emotions will be running high.
 
Sorry to hear it has been a tough week. Hope hospice allows you to enjoy your own home for a long time.
 
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