how to go it alone

[irismarie]

How many here live alone and have to cope alone? Is it possible?
Love to all
Irismarie

 

[BethU]

I don't live alone, but am the caregiver for my husband, who is also very ill. We have managed so far with paid caregivers 5 hours a day, but we will both have to go into a nursing home asap. There is a limit to the amount of self-care you can do with ALS, as it progresses. Family support is best, but paid help can get you a long way.

 

[cukita99]

when you get like me that you cant do anything for yourself, its impossible to be alone. i live with my 20yr old son and its very hard. right now i am struggling to find a caretaker.

 

[BethU]

Cukita ... when your previous caregiver returns from her month's vacation, would she return to you? It sounds like she was reliable. Hope you get help soon!

 

[cukita99]

im not sure. the lady recommended from MDA wanted the job to be permanent, so my caretaker offer to quit so i could hire her. she never showed or call me. so my caretaker doesnt know i have no one. i hope she will call me after her vacation and wants to come back.

 

[BethU]

That would be great if she comes back. Is there any way your son can reach her?

I hope MDA will help you when everything returns to normal next week. They should get in touch with the caregiver they sent! Everyone on the forum is worried about you. Keep in touch and let us know how things are going.

 

[irismarie]

Oh Cukita, I am sorry! Hardest thing about this -worse than ANYTHING, I think, is the way we have to become dependent on others. I asked the question as I am still trying to decide between a carer who is unstable and sometimes violent, though the rest of the time a good carer, (sorry, I have already said that elsewhere) and being alone. Cannot afford to pay for a helper. Such a big decision. Do not want to regret making the wrong choice. Looks like I should hang on to him, after all.

 

[indigosd]

Hey irismarie, maybe I should get a visa and bring Web, Matthew and I to YOU! We could do it and have a wonderful time!

 

[irismarie]

Come in April . Before then it is too cold and I do not have cENTRAL HEATING; but I would love that

 

[cukita99]

well i cant afford to pay but i cant be alone either. my son can only help so much, but he is young, needs a life.

 

[BethU]

Irismarie ... be careful if your carer is sometimes violent. I hope not toward you! Disabled women are disproportionate victims of domestic violence. Are there any social services that can help?

 

[irismarie]

It is hard, Beth, but the rest of the time he is the best carer ever.....;;;;;refuses to realise he needs help. It is always my fault, of course. Never mind, most of the time I can sort it!;-)

 

[BethU]

Oh, boy ... please mention this to the nurse. If he is violent toward you, he will not change without help.

Please be safe!

 

[GlennaB]

that is my biggest fear. i live alone and have managed so far, but i know there will come a time when i will need help. how would i go about finding help? of course, i am on medicare and poor as a church mouse!

 

[indigosd]

Oh, Glenna, is there no one? Are you researching this with ALSA or MDA? How about the State? There has to be something or someway! What have you researched? sending you hugs and you do have someone, you have US! Kay Marie