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Sep 12, 2007
Loved one DX
Cathderal City
Hi everyone!

I'm struggling a little bit today with what is my own guilt. As most of you know, my dad has had issues with his caregiver and I am working on making some changes for him. At first, I thought it would be great to have him move in with my family. I'm married with 3 boys.. 8, 10 & 15. My husband and I both work full time and I would need to hire a nurse to come in a few days a week, for a few hours at a time, to look after him.

After speaking with his case manager and re-evaluating things, I am wondering if it would just be best to find a great home for dad. He's progressing rather quickly and I feel as though doing so would simplify things in the end because he wouldn't need to be moved again. He's going to be fitted for his electric wheel chair on 11/3 and has a referral to see the doctor for his g-tube. He's constantly falling and getting hurt and his choking is getting worse... nevermind the fact that he refuses to give up smoking. LOL! He says "it's not going to kill me!"

I'm sorry if it seems as though I am rambling.. I am just so confused. I want my dad home.. where he belongs; but I know in my heart that he will not get the care he needs, as I will not be able to physically handle a lot of the things he will need done.. like cleaning his feeding tube.. I will probably pass out. LOL.. am I wrong for having these thoughts or should I just suck it up and deal with it?


Kari- there are many ways you can make a difference in your Dad’s life and care, and it doesn’t have to be all about full time care 24-7. Before we put my Mom in a home, I considered re-doing the house and hiring staff. But one of the agencies I called asked some important questions. They wanted to know why I was thinking of taking on this impossible task. There are a lot of emotions that come into play when thinking about placing a loved one. The best advice I got was to use objective reasons whenever possible. Easier said than done, I know!

You will come up with the best solution for all of you, I am sure of it! Cindy
Thank you, Cindy.

You are right... easier said than done. I think I know what the right decision is.. for everyone. I still can't help but feel like I am less of a daughter for feeling the way that I do.. but, I do that everyone just wants what is best for him in the end.
Hi Kari. Have you asked your dad what he wants? If it was me I'd rather go to a good home than put my family through hell. I'm not worrying about being a burden. Family is there for you whether you are a burden or not. Burden is one thing, not being able to cope is another. Just my opinion. I could be wrong.

My dad's only desire is to not be a burden to any of us. He keeps telling me that I have my own life and family and I don't need the added stress of taking care of him. However, in the same breathe, he also says that if he has to go to home he will die. That is why I am so torn. I almost feel as if there is a "hint hint" in there somewhere. Know what I mean?
I think it is probably better to get a jump on finding a good placement than waiting until there is a crisis and having to settle for what is immediately available. Then everybody can be OK with the situation. He's still going to need you to advocate for his special needs but that is better than you knowing what he needs yet not being able to deliver.

Right Liz- I forgot my own advice: get on the waiting list for the place you want, because if you decide not to take it when his name comes up, no big deal. On the other hand, if you close out this opportunity and it turns out you really nead it, you will be sunk if his name is not on the list. kind of a "just in case" option...
Another thought, Al- I'd rather be cared for by people who choose to do it and are just starting their shift, relaxed from doing the things they like on their time off. I'd hate to see my own family worn to their last thread on account of me, or anybody, for that matter. :)
We are procrastinating on what to do, too. Meanwhile my mom who was using a rollator was home alone, balancing against a sink to do her hair and fell, twisting her leg and breaking it in two places. She than had to crawl to the rollator to get the cell phone to call for help. Thirty days later she came home from the hospital full time in a wheel chair and unable to do 80 percent physically that she could beforedue to bone break. My brothers and I knew it was an accident waiting to happen, and it was.

It is a hard decision to make. And ours is harder due to incomplete financial records on my parents part. My brother has already spent 3 1/2 hours in an office trying to get home health care for a few hours. We are using up all our sick time on paperwork problems. And my friends just suggest quitting my job to care for her full-time.

Just sympathizing - no advice here.
Wow. It is easy to give advice for others when you don;t have to live with the consequences, isn't it? Did your friends suggest how you would pay for your own bills while you are home taking care of Mom?
Kari, it's like deja vu to read your post! I don't know about other states but California has funding that can help pay for a caregiver, ask the social worker about it, it's worth it! I lost my job that I had worked so hard at for the past 7 years and now that Dad is getting worse and soon may be going to a care facility, I will have to find another source of income. I had really worked up the ladder there and though I did not regret it at the time, I have some regrets now because I am in a financial bind, after having worked so hard...

Do your research into all of your options before you make any decisions. There are organizations that will help besides hospice and the ALS organizations, especially the MDA. They have enormous resources for ALS that are virtually untapped because people don't think about contacting a NON ALS organization.

Unfortunately ALS is totally unpredictable and your Dad sounds like he is where my father was about 2 years ago. He may be around for a while yet, some ALS patients can live for 10 years or more and once he has the g-tube in his overall health will probably improve.

ALSO, if he is on Hospice they should be able to provide a home health care aid that will come over for 2-3 hours at a time, from 3-5 days per week. I had that for a few months and it was very valuable to me, it didn't cost me a dime and the person was well trained. Hospice also has volunteers who may be able to come sit with your Dad.

RaggedyMary, as Cindy said, friends give lots of simple advice but unless they have been in your shoes, the advice unfortunately doesn't usually help. Whatever you decide has to be well thought out. Your mothers Dr. should have some resources for you and would also know if she qualifies for Hospice care. Hospice doesn't care about financial records, but I think that you have to be on medical or medicare to receive services. It may vary from state to state, I don't know...but there is a lot of help out there. Another thing you could do is call the ALS organization because they can point out local resources to you and even contact organizations ON YOUR BEHALF and pave the way. THey did it for my dad when he got turned down for disability...apparently the waiting period gets waived for people who have ALS, due to the unpredictable nature of the disease.

Crazy but I know of tons of local resources and when my father LETS me, I am able to get just about anything he needs for free. Our problem isn't lack of help, it's his flat out refusal to accept most of it. Ironic huh? Anyways, if my research can help someone else get the help that they need then that will make me feel better!
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