Diagnosed 12/23/2013

[Dbabine]

I have bulbar ALS and I am in AZ, still working. I have a house to sell before moving back to Maine to be with family. The trouble is, I sense my kids won't be helpful enough. I may die in my sleep from saliva. From what I read, I should not give them even a year to see what they will do. I can go to TN to live with my sister. Decisions, decisions, decisions

 

[zoohouse]

Welcome to the forum, and I am sorry about your diagnosis. It is always a tough decision on where one should be. My husband is from TX, and after we married (7/11/11) was going to immigrate to Canada before he was diagnosed. After diagnosis, his ex-wife felt he should stay in TX so that his kids would be able to see him for the time that he had left. In 3 months they did not phone or visit, except his youngest daughter who came when called to get groceries. He had brothers and sisters there, who also did not visit or call. I decided that he needed to come to Canada, as no one was taking care of him at all, and he wanted to be with me as well. 15 months later he is almost a total quadriplegic, and his youngest daughter lives with us, and goes to college. His youngest son comes for summer holidays, and neither of his older kids have visited even though we have offered to pay their way.

What I am trying to say is that you know your own kids, and if you don't think they will be helpful go to where you will get help. There are some really amazing kids out there who do help with their parent that has ALS, but I find most young people are pretty wrapped up in their own lives. My sisters, have been 100 times more helpful than anyone of my husband's family. I'm sorry if I am sounding bitter, but I hate seeing my husband hurting, and disappointed in his family. Our church has also been extremely helpful.

 

[affected]

I'm also sorry to hear of your diagnosis, but you have come to the best place.

I feel you should go with your gut feeling on this one. Have you talked much with your kids and sister about your options?

Sadly I've had a similar situation to Paulette in that my PALS kids don't do much at all. My friends do a lot, and my children who all live further away do what they can.

Only you can make the choice, but you can bounce options off the wall here on the way.

 

[ottawa girl]

Welcome - glad you found us - sorry you had to.

As a PALS, i can tell you that winter is really tough on us. I have read warmer climates ( not too hot though!) is helpful. I live in Canada ( nearish to Maine) and I find the cold very challenging as it affects my muscles most aggressively. Proximity to our ALS clinic was also a consideration in our decision.

Moving is hard - leaving a home we loved.. We relocated to my home town to be close to my siblings - best decision ever! Since most are retired, they are super helpful with daily visits and household chores. I am blessed. As a parent, I would not want our son to give up any part of his life or curtail his education because of me. He skypes and visits on a regular basis. That's good enough for me.

Your diagnosis is recent - so take a bit of time to figure out the best thing for you. It 's all about you! A pros & cons list worked for me.

We are here for you!

 

[Mediasmart]

Ottawa Girl gave some great advice. My ALS clinic is in NY City and the appointments are always in the middle of the morning. It is 100 miles each way and to make it on time means a 5:15am train and all the slogging around. By middle day, I'll all in and then have to get home so proximity is a huge issue and that only gets worse, not better.

The other part is although this is ultimately "your" issue, it really saps or is likely to sap every ounce of strength and good will from those around you. Sometimes, if you are able, a more controlled "skype" is an interim solution that has great merit so you keep in touch while your voice holds out...point being you have a little time to sort this through so take it.

Family has as much at stake in this decision as you do - or to some extent anyway. Make sure they are as ready for you as you are for them.

 

[MaxEidswick]

>I have bulbar ALS and I am in AZ, still working.


>... Decisions, decisions, decisions

FWIW, for me the first weeks & months were no time for decision making or even rational discussions about plans, etc.



Max

 

[Janie H]

So sorry that you feel that way about yout children, I agree that you should take your time in decision making, I was put on Zoloft for my nerves and no longer have saliva issues. My family fills my whole yard with cars every Sunday, I am blessed. My son and mother are there daily, sometimes they will suprise you, I never thought that I would have so much support. Family that I didn't think cared have been there for me.

 

[Tx Daddy's Girl]

First things first. Wrap your head around this. Research your doctors and find the best combination of family and physician before you pick your next home.

As far as caregivers. For us, in the beginning, it was just me that could drive my dad to his appointments in Houston as my mom doesn't drive well in big cities (or ride well either, lol). We had offers in the beginning of "oh we will drive you so your daughter doesnt have to take off" and when asked, backed out. We learned quickly we could only depend on eachother. Once my dad became bed-ridden his community was wonderful. They are 45 minutes away and they have helped my father and mother tremendously. Hospice comes in 4 days a week to bathe my dad, change sheets, etc. my dads friends and co workers have helped move him, neighbors walked the dog and cooked.

I'll yell you what my therapist told me. Don't make decisions while you are still emotional. Wait until you've fully grasped this, gather all the information and make a decision based on facts - not emotion. Good luck

 

[Barbie]

You do not want to move twice--this is a decision you must include them all in. before you decide you need to have a very honest and sincere conversation about what caregiving is like. perhaps you could get the local ALSA to send a representative to your kids in Maine and have a Skype conversation with them. If there are several kids in the area, they may think they will share the care which would be easier on them. but they may be saying come from a sense of responsibility before they fully understand what will happen as time passes. You know your kids best, but we see a lot of adult kids step up to the plate in this forum. It is not easy! you should have the same conversation with your sister--maturity and experience is on her side but age and her own health could be a factor.

Listen to all of them, don't judge, and make a careful decision. don't rush your decision--

Good luck to you and I am so sorry you had to join this club!

 

[MaxEidswick]

ditto Barbie;s thoughts ...

>You do not want to move twice

I am in the same position, stay here in TX for work or move neared to family (mainly form my wife's sake) in Oregon. But moving twice is not an option for us giving the curent rate of progression.

>perhaps you could get the local ALSA to send a representative to your kids in Maine

That is a great idea, the same may be true for the MDA.


>Listen to all of them, don't judge, and make a careful decision. don't rush your decision

sage advice, although it can be hard to listen and it may be more than one conversation. Also, the ABC's of ALS on YouTube is very helpful if they can take the time to watch them. The links are somewhere or I have copies on my blog: My ALS research

 

[Janie H]

The MDA and the ALS clinic have been very helpful and medicaid has offered to send a home healthcare nurse, I have had a few nurses out and they brought me a wheelchair and showerchair, this is helpful to my care givers, there is help out there wherever you decide to go.

 

[dfield00601]

I was dianosed with als bulbar a year ago I have been using coconut oil for a year and use namenda to protect nerves and practice karoki to keep my throught stronger and swollow a lot to exersize tougne