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sharks

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CALS
Country
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sd
Hello,
I've been following this forum for quite some time but have never had the time to share. my husband was diagnosed with ftd 2014 ALS june 2015.

As of this morning he refuses any help with breathing issues..no oxygen no BiPAP no doctor visits no showering it's been almost 5 days again, im lucky if he is able to eat once a day and fluids consist of Popsicles. he's lost almost all ability to walk, refuses to use a walker or wheelchair. He is mute except for the words die and good.

He sleeps most of the day. He will no longer let us weigh him or take oxygen saturation levels with finger monitor. He can't hold his head up for more than 5-10 seconds and refuses to wear neck pad. It takes all his strength to just breathe these days. He still continues to walk on his own body bent in half about 30 feet holding on to things. 9 out of 10 times refusing help or assistance. His means of communication is thumbs up or flips the you the bird with a look to kill if he mad or upset.

I know he will refuse a feeding tube.. So I'm here watching him choose to die on his own terms and feeling a great amount of guilt and anger because I've lost everything good and loving of him I hate FTD and ALS

Life is pretty bleak at this point. Do any of you know what stage he's in, I don't know and he refuses to see the doctor.. I don't know if it's time for hospice. Is he close to 6 months? My daughter was going to enact her FMLA in November and cone home to help but she thinks she should do it sooner any advice.
 
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Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,186
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
Hi Sharks, I'm glad you decided to join in. Maybe some of us can help a little.

You're pretty smart to realize he's dying on his own terms. I wish we could give you estimates, but it seems so unpredictable. Falls and pneumonia can really speed things up.

There are no real "stages" of ALS because the disease is so different for each person. I would ask your doctor to sign off on hospice. If a hospice patient lives longer than 6 months, they'll reevaluate him. I'd say go for it.

Don't feel guilt. You've done nothing wrong. You've been a hero to a terribly disabled man. Unfortunately, he can't appreciate that.
 

KatieNBoyd

Distinguished member
Joined
Oct 17, 2015
Messages
147
Reason
Lost a loved one
Diagnosis
11/2015
Country
US
State
MT
Hello Sharks,
I encourage you to contact Hospice. They are there for both of you. I can tell you from what you have described that they will help. They are a gift of people that understand this stage of dying. You need them.

As Mike states do not feel guilty. Your husband has chosen what he wants to do even with the FTD.

We began Hospice the first of the month. My husband still gets around on his on however slowly and struggles to draws his breath. He isn't totally honest with the Hospice nurse when he is having difficulty but is coming around to trust her more.

I believe these men who use to (In my case) run their own company, Build million dollar homes and beautiful cabinets, climb mountains to hunt and fish and announce at parades, auctions, and fundraiser are feeling awful at losing it all.
Hugs to you on this journey.
Katie
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,673
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Sharks,

I'm sorry for your losses, but would try to remember that while he may not be who he was, that is still part of your past and future in the sense that you will always remember those things.

There is little staging at this point -- he will be his own determinant. If he seems to have things he wants to do or get done, I would try to help.

Best,
Laurie
 
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