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Old 03-25-2012, 10:41 AM   #1 (permalink)
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Default If you were starting over again

and money were no object what would you want to have done on this journey?
I am talking about the whole picture.
Obviously we all want the life experiences we said we will do someday (our so-called bucket list)
But how would you have set up your living situation? would you have moved (or did you move)? did you modify your house? what are the things you did and are happy with? what do you wish you had/could do?
What legal things did you wish you had addressed? beyond wills poa guardianship for minor children healthcare proxy living will advanced directives and social security representative payee? am I missing anything in that list?

What equipment do you have or wish for and when do you wish you had it?

What can you do to help your pals stay as much themselves as they progress?
I have been reading a lot and it seems like there are amazing communication tools including some way to record your pals voice ahead of losing it in a program that can then be used by your pals to "speak" in their own voice...

I know this is long and addresses many issues. if anyone has a thought on any one of them please chime in even with a word or two!

ps money is of course limited as it is for all of us. think of this a giant wishlist (what you would put after your first wish -a full and instant cure!
Thank you all
love
Nikki

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Old 03-25-2012, 11:27 AM   #2 (permalink)
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Default Re: If you were starting over again

My husband had serious breathing difficulties from the beginning. At the time of diagnosis, his FVC was already at 60%. However, he did not wish to have invasive ventilation, nor a PEG.

Instead, we opted for the portable non-invasive ventilator, Trilogy, and that has made his life as normal as possible. Very happy with that decision. Two years after diagnosis, he still eats normally. We are happy for no PEG, an unnatural invasion of his body.

We could never understand why folks rush to power chairs, which we considered impractical in our home. We use a simple, lightweight transport chair when necessary around the house and when we are away from home.

We added grab bars in the shower (with shower chair) and a grab bar in the toilet area. He uses a walker. It gives him confidence that he can get around when he wants to, and so he continues to get around. We purchased a very large TV to provide novelty in his life. We watch a Netflix movie every afternoon.

In short, by keeping aids simple and keeping life close to normal, he sees himself as chronically ill rather than inevitably terminal. Obviously everyone's experience of this disease is somewhat unique. Our journey has been to slow down the experience of the slide, rather than emphasize it. Others will offer differing points of view because symptoms and personal outlooks vary so widely.
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Old 03-25-2012, 02:31 PM   #3 (permalink)
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Default Re: If you were starting over again

Nikki,

If money were no object, I would have hired as much help as I could get. That way I would not have been the constant caregiver, with the spousal role being relegated to the back burner. As it was, I was his sole caregiver and the burn out factor loomed heavy. If I could have done that, I would have taken my husband more places. I was too worn out, both mentally and physically to do so.

Although you cannot make people do something they are not willing to do, I would have tried harder to get his family involved. Help with care would have been great, but just a visit from his siblings would have been a wonderful thing, as his life was drawing to a close.

And yes, if I had the money, I would have completely made all doorways wider. I probably would have hired someone that specializes in handicap design to come up with the easiest and best way to change spaces. I also would have hired an OT to help with arranging that space to make it easier on my husband and myself.

My husband tried to record his voice early on, but his bulbar symptoms prevented him from doing so. I encourage that be done. Here is the link to Voice Banking:

http://www.asel.udel.edu/speech/ModelTalker.html

Also, I would have gotten the van modified for the PWC, whether my husband liked it or not. I would have taken more things under control, instead of thinking "he is the one with the disease, so don't upset him." If it made sense, I would have gone with it.
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Old 03-25-2012, 02:32 PM   #4 (permalink)
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Default Re: If you were starting over again

I would have gotten Long Term Disability coverage when I first noticed symptoms.
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Old 03-25-2012, 03:01 PM   #5 (permalink)
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Default Re: If you were starting over again

Thanks everyone this is just the sort of advice I am looking for!
It really helps!
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Old 03-25-2012, 03:25 PM   #6 (permalink)
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Default Re: If you were starting over again

If money were no object I would have a small completely ADA compliant home built on the ocean with two other houses one for my daughter & children and another for my son and children on same property so I could spend the time remaining as independant as possible with less strain on my family as I would also hire a full time live in nurse/companion so family could continue as normal life as possible yet I would beable to be part of their lives as much as possible without becomming a burden and taking up their time to live a normal life.

With that being said.....

In Reality, one day at a time, as things around me change daily, my optons and needs change. Contentment with what I can do and cannot, play a big part on how my day goes and what I need. As for the use of a PWC, it offers independance, if I had one others would not have to constatnly helping get from point A to point B as arms arm so weak now. When no one is around and arms arent working well I am stuck just sitting.Things do change quickly sometimes most folks think and prepare for what is a head and try an get ready as the care is so labor intensive as CJ has mentioned. If you are a Cal you will need to prepare, how will you get them off the floor if they fall?, can you pick them up?, If not then a lift will be needed. There are so many others that have paved the way of what will be needed at the most precious cost. They can give you the best advise as CJ has.

I Like the no worry about money option best!.........if only.....
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Old 03-25-2012, 03:33 PM   #7 (permalink)
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Default Re: If you were starting over again

I would have gotten AFOs for both feet/ankles a lot sooner and avoided the vanity in me that didn't want to look "handicapped". Now that I finally have the AFOs, I walk better than I have in the last 6 months. If only something could also be invented to restore hand/arm strength & coordination!
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Old 03-25-2012, 04:01 PM   #8 (permalink)
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Default Re: If you were starting over again

Upon further reflection, I also would have had my son (who was 6 when his father was d x d and 11 when he died) in a school that had administrators more empathetic towards our situation. Children are cruel, so keep that in mind for your sister's situation as her condition declines and children take notice. Your niece will need support and counselling, regardless. If I could have afforded to take my son out of public school, I would have.

I also would have involved my son more in the "care" part, very early on. I would've let him do more for his dad, instead of trying to protect him. That only caused grief down the road. Your niece is at an age that she could be a big help and in the end she will not have so much guilt about "why didn't I do more to help mommy" if she is involved at some level.
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Old 03-27-2012, 10:05 AM   #9 (permalink)
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Default Re: If you were starting over again

Purely based on our experiences:
Definitely buy the bidet with the remote - best $500 spent.
Rather than spend as much time trying to convince my husband to record his voice for communication, I think I would have him record his voice reading more stories. He recorded himself reading 2 christmas stories, one for each daughter. Putting his life into predetermined phrases frustrated, angered, and depressed him - he didn't record many and when it was all said and done I donated his dynavox. I "saved" his recorded words on a usb stick but I no longer have software to listen so it doesn't matter. We do have the books though and someday he will read to his grandchildren. Recording the books he felt productive and had a heartfelt gift to give.

I think I would purchase the used van from a private owner if everything was right. I went with a specialized dealer but the salesman wasn't more knowledgable than I after my research here and really if anything went wrong i was going to a local shop anyway. The dealer also had a "buyback" policy but really couldn't be nailed down to a price - market fluctuation ya know. Seems to me, an older van, with low miles, doesn't depreciate $7000 in 6 months...but that was their offer.

Be involved with the funeral arrangements if you will inevitably be handling them. I was not because i could not deal with the concept. My husband had help from his brothers....he was so proud, "funeral is all arranged. You don't have to worry about anything either. You will be taken care of." I knew the "taken care of" part had not been defined but it made him feel good. I did believe the arrangements had been completed. Yes, the funeral was paid but nothing was "put together." Readings, music, obituary, etc. apparently wasn't addressed - surprise!

Medications: I would want to know all the side affects ahead of time and how to handle them.
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Old 04-02-2012, 09:22 AM   #10 (permalink)
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Default Re: If you were starting over again

The one thing I would have done differently was hired more help. Like CJ, the spousal role went on the back burner because of caregiving. I would love to have done that differently. I would also have had him start BiPap immediately after diagnosis, and I would have gotten the Trilogy instead of the standard Respironics BiPap machine. It is far more portable.

We did modify the house. We widened all doorways and completely remodeled the bathroom with a barrier free shower and ProLine drain. It was and is fabulous. We put a large glass door with floor to ceiling glass windows on either side so that my husband could really see out in the mornings while he waited for his day to begin. We could roll him out onto the patio and let him enjoy the day before setting him up in his lift chair.

I am so glad we got the van and power wheel chair as soon as he started having leg weakness. It made travelling so much better. He used the walker for a long time in the house, but it was so much safer out and about to use the PWC. We never used it in the house. We had a fantastic shower/commode chair that worked even better than the transport wheelchair. We used the transport chair when we had company, but he actually preferred to be moved via the other.

Thankfully, we started OT and PT (twice a week each) within a month of diagnosis. This kept my husband much more functional. He got frozen shoulder in the first month after diagnosis, and they worked it right out.

Back to it, though - additional help is the biggest thing I would have done differently. I would have had someone come in from 10pm until the morning CNA got there to help me get him out of bed so that I could have slept. That would have made all of the difference in the world.
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Old 04-02-2012, 03:00 PM   #11 (permalink)
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Default Re: If you were starting over again

Totally agree... but not just help with Glen. Would have hired the gardener and the housekeeper much sooner.. and found a good, reliable handyman. I really did not notice the level of disrepair the house and yard had fallen into until after Glen was gone.
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Old 04-02-2012, 04:21 PM   #12 (permalink)
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Default Re: If you were starting over again

Katie, I'm so with you. Especially on the gardener! I have someone coming tomorrow.
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Old 04-02-2012, 06:18 PM   #13 (permalink)
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Default Re: If you were starting over again

I wished we had taken that Alaska cruise we had planned but when I was diagnosed I could have gone. I did take a trip with just three more ladies we went 3500 miles round trip round had a great trip. But i wished we had gone out to eat a lot more right now I am on blended food. Prime Rib, Bar que rib, or just meat loaf smashed potatoes and green peas.
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