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Cyn, not sure about US but here in Canada, SS (without any pension to speak of) does not give you much. So, I am hoping you are doing OK. Seriously consider gofundme.com
You can advertise about that here, in facebook, through your friends circle, through your childrens circle etc. I promise to share that page on my social media too. It will help at least for the van expense. It spreads really fast. You just need to choose right words to the get it going. Look at some of the pages there and you will get an idea.
Does it need to be said again?
Hospice.
I know your husband doesn't want someone else 'taking care of him' but, they come in as you need them.
Other than the convenient fact that they come to you rather than having to load him up and trudge to the doctors office, he would see no difference in who is caring for him unless more help was wanted. You would still be the one doing the day to day care.
At this point, we see the home care nurse once a week for an hour or so...hardly an intrusion into ones life.
While with them, all medications needed due to the condition are covered as is all equipment. Having to go to the doctors whenever there's a need is unnecessary...they come to you.
The drugs are even delivered.
Medicare covers the cost completely.
It is the last time I'll bring it up but hope you become convinced so you can convince him before you end up needing care yourself.
Yep.. There's no need to feel guilty. The last thing you need is for your health to deteriote. You cannot sustain the emotional and physical stress that has been upon your shoulders all by yourself til the end.
Please do some serious thought to what Elston and others have mentioned.
Good Morning Friends. It appears to be another gorgeous day here....I hope where you are. I did get an email yesterday from a friend in Maine reporting that the forsythia is beginning to bloom....and early spring weather had reach Maine.
It's a sunny day here and I hope you are getting some of this.
Please look into any help you can get. There is some good advice from others here I'm glad to hear you are at least eating Brinner(breakfast for dinner)
We are off taking the kids on a bike trip today so I will stop back tomorrow.
Good morning friends.
I did tell my DH yesterday that I do require some help and he knows it too. So I will be checking into what is available around my area. We have a nurse coming in today to check on the feeding peg and she will have some thoughts on it I am sure. If for no other reason then to give me the time to get what we need from the store. The next clinic is coming up and they will know exactly what I need to do, who to contact for our area.
Last edited by cynwldkat; 04-23-2014 at 07:35 AM..
I have been reading about our local Hospice but from what I have read it is for people who only have months to live and we have no idea how long my DH has--could be years...ALS is strange and really makes it hard to know. But I will make the call and explain my situation and see what they have to say. My DH just now told me his doctor mentioned Hospice a while back to him but he told my DH it was for them to come out and talk to us. Guess I will call his doctor and ask him to have them come out.
Last edited by cynwldkat; 04-23-2014 at 08:35 AM..
cyn you won't believe the stress that will be relieved from both of you once help is coming to your home. Hospice will be able to tell you all kinds of help I'm sure and maybe where to get a home helper that comes to clean your house. They can help with meal prep, bathing, dressing and appointments they are very much appreciated and you'll wonder why you waited so long.
Cyn, the 6 month time frame is based on the fact that 'given the normal course of whatever the condition is, one would expect death within 6 months.
If your husband didn't have his breathing apparatus or didn't get the feeding peg or didn't have any of whatever helpers he has, don't you think he probably would have already passed that 6 months?
Hospice doesn't prevent the use of those things just so the "6 months" decline will occur since they are also used to make him more comfortable and that's the main purpose...to make what life is left as easy and comfortable as possible.
It isn't a time limit or a prediction given a person. It is a recognition of the advance and severity of their condition.
Believe me, it's kind of an emotional hurdle because of that language that you have to get over but it's relatively meaningless since a lot of people stay on the program much longer....some conditions even allow them to get better enough to go off it.
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