What's next? (from my dad)

[Julie B]

My dad isn't much of a typist and has asked me to write a post for him. My mother (age 75) was diagnosed with bulbar onset in January 2011; her voice began showing signs in April 2010. She is now unable to speak and has had a PEG since June 2011. She is still able to get around without assistance, although she is getting progressively weaker, mostly due to inactivity. We have also noticed some cognitive impairment, as described on the ALS website.

The following is from my dad...

My wife, Marion, can no longer speak and she doesn't seem to want to communicate with me much. Instead, she sits on the couch and plays games on her iPhone. She texts with our kids, but doesn't have anything to say to me, unless she needs something. She is able to get around without needing a cane or a walker; she doesn't really need assistance with anything. She prepares her own meals for the PEG, and does her own meds too. But lately, she's been telling me she feels weak. I keep thinking, once she starts to decline, it will go quickly, but my daughter tells me there's no way of knowing.

The saliva problem is already an issue, but she won't let me ask the doctor for a prescription for the suction machine, and she refuses to take the drugs that help to lessen the saliva. Instead, she sits with tissue hanging from her mouth, filling a trash can once a day. She keeps her head down most of the time, so her neck seems to be getting weak, as well. Our kids have made suggestions of things that will make her life easier, but most are rejected and nothing is accepted without an argument.

I know she wants it over, and as much as I hate to lose her, I don't want her to suffer. Telling her that she could still have a few more years would not be an encouragement to her, but I know that's a possibility. It seems she can find nothing worth living for.

I guess I want to know what to expect next. Is it going to happen a little at a time, or all of a sudden? I spoke with my doctor and he says, in the end, she will be in hospice, but how do I know when to make those arrangements?

I would appreciate any advice.

Jim

 

[lizzie11957]

Jim, I was diagnosed with PBP in October of 2010. I think the first year is the hardest. I am a teacher and continued to work until just this month. I have no voice and communicating is difficult and often frustrating. Here are some things that helped me.

When having a conversation with just one other person (husband), we both use writing to communicate. This way we are both communicating at the same speed. The conversation is more natural going back and forth. Start by writing her a question and handing her a pen.

Buy some really pretty notebooks and colorful pens and leave them around so that you both have easy access. I have an iPad with text to speech, but frankly, I prefer writing.

Laughter! It truly is the best medicine. Write some jokes! Tell her something stupid you did. Make her laugh.

Since she can still walk, take her for a walk. Hold her hand and tell her how beautiful she is. Just being outside may lift her spirits.

She may be frightened and not able to talk about it yet. Give her some time and remind her that you want to take care of her. When my husband told me "I like taking care of you." it was the most romantic thing he's ever said. I can honestly say that our relationship has gotten much more intimate than before my diagnosed.

God bless both of you! (((((hugs))))) Liz

 

[mysticunicorn66]

My sister was resistant to starting new meds that would help, and frankly anything else the would help her. Give your wife some time. There are also foam neck braces that can help hold her neck up if it is getting weak. I think for my sister, she had a hard time looking for reasons to live and was depressed. God bless both of you. ((HUGS)) to both of you and your family. I agree fully with Liz, take your wife for some walks. That was something my sister missed the most because her ALS started out in her legs.

 

[Katie C]

If she is having cognitive issues, resistance is pretty much to be expected. At some point I just gave up trying to figure out what grievance offenses I had committed and had to accept I was the target of the anger and nothing was going to change it. This is going to sound horrible to those that haven't been through it but i found that losing strength in his hands was quite helpful... if he wasn't fixing his own meals, it was easier to slip in meds. Didn't have to fight about the car because he couldn't turn the key. Easier to keep him from wandering if he couldn't open the door. So I guess I'm saying that my advice would be don't try to make her act differently... try to find ways to work around it. And try to not take it personally.

 

[Atsugi]

Julie and Jim, you probably already know that the great hallmark, the big deal, the most difficult part of ALS is not really the dying, it's the total lack of control over the simplest things. "I can't choose my fun today, I can't work if I choose, I can't hold my grandchildren if I chose to, I can't even scratch my butt, I can't just get up and go to the bathroom when I feel like it, I can't roll over when I'm uncomfortable, I can't even speak or breathe as I wish.

Maybe Marion is already in mourning over the loses she's about to suffer.

SO, in my humble opinion, I think that the greatest thing we can do for our PALS is to let them choose, let them decide, let them have whatever they want when they want it.

Your situation is different, but here was mine: My Krissy could say, "itch" and one of us would go scratch her. If she said, "leg" we would arrange her legs comfortably and massage her feet.

Sometimes the greatest gift is simply to sit there with her, quietly reading, by her side. Touch her. Be there for her. Let her call the shots.

WHEN to call hospice? Here's one criteria I can think of: When you feel that the situation needs more medical training than you have. When you feel that the help needed is beyond your capability. And of course, whenever she says so.

Please stay in touch, and tell us about her condition and the home situation quite often.

 

[tammyg]

WOW, My dad had Bulbar. Sorry you are here. My dad was so hard headed, he swore he would not get the peg but did. He had everything. The suction machine is a must. Dad could not talk eighter, had another machine to sleep, and other was the cough assist to bring junk up then suction out. They gave him a neck brace to hold his head up, they gave him leg braces to wear that never made it out of the package. They told him to order a skooter because by the time it came in he might need it, he wrote them a note saying "No, i will be gone by then" Why do parents always have to be right LOVE HER AND HUG HER ALL YOU CAN

 

[Leinsterlainie]

Hi Jim,

I'm so sorry for what your family is going through. I'm no expert on the condition but I can share my experience of how it happened with my dad. It was 20 months from diagnosis until death. That was quite fast it seems. Some people suffer for years. He was an introverted person anyway, he preferred to sit and listen than to talk so never really communicated much to us how he was feeling.

The illness didn't take him all of a sudden. Little things went bit by bit. He could drive, make meals, go for walks, go for a beer, go up the stairs, do anything really at the start. As time went on and he became weaker one by one these things became more difficult. It started in his arms so driving was the first thing to go, then he couldn't go for meals or drinks anymore as he didn't have the strength to lift his hand to his mouth and he felt embarrassed. Obviously he needed help getting dressed, to do up buttons on shirts etc. I know its weird but he had a total phobia of having to wear sweats all the time, he was always a shirt and trousers kinda guy! Next was he couldn't really be left on his own all day as he needed someone to make him meals. As I say this all happened little by little. You could see a decline maybe every month or two.

He went on an assisted breathing machine (nippy) 4 months after diagnoses. We were told he would only last about 9 months after that if we were lucky but he made it to 16 months (he always liked to prove people wrong!) It took a while to get the hang of the machine and to find a mask that was comfortable for him but once we did it was fine. This is where you could really measure the decline. He started on the machine for maybe 30 minutes a couple of times a day and all through the night. After a couple of months he'd need it after every meal as well, as eating took a lot out of him. As time went on he needed it more and more until finally it was on pretty much all of the time.

I wish i could more informative as to how many months in exactly these things happened but to be honest it was such a gradual thing that I barely noticed. You just get used to things going and each time he was unable to do something or asked for help I might feel like I'd been kicked in the stomach but I just got on with it.

As for the saliva issue there was a patch my dad had, it was put behind the ear. It was actually to help him with. Runny nose that he had constatnly from the nippy but it totally dried up his mouth too. I think the name was scopiderm or something like that but I think all the meds are under different names over here anyway.

I know it doesn't look like it but I didn't actually mean to write an essay here!

I just want to leave you with this. My dad walked, albeit short distances, until the day before he died. He talked until the day before he died. I don't want to give you false hope but that's how it was for us. I know we were lucky.

I hope that this has helped. You and your family will be in my prayers.

 

[Atsugi]

Wow, very interesting Leinsterlainie.

I'm curious, if your dad was walking and talking until the day he died, then I have to wonder what it is that he died from? Seems like he was also eating, too, yes?

Please continue your essay. Very informative, indeed.

 

[Leinsterlainie]

The dead cert cites cardiovascular failure as a result of MND. In the end he literally slipped away in his sleep.

About a week before he died we had to bring him to the ER as he couldn't urinate and his appetite had all but gone. They didn't fit a PEG at all. The only time it was dicussed was the week leading up to his death and then they said that he was too weak. He was very agitated and they didn't really know what to do with him in hospital. I don't think they had any experience of the disease. I come from a small enough town. Anyways they fitted a catheter, kept him over night and sent him home. He was very confused at this stage and started having flashbacks and hallucinations periodically.

He got home on a Monday afternoon, he went for a sleep in his chair and woke up perfect. We were telling him all the crazy stuff he'd been saying in the hospital and he laughed with us. He went to bed that night and on Tuesday morning, for the first time ever he said he didn't want to get out of bed. He was too tired. He started to get agitated again, seeing and hearing things that weren't there. Then he got really sleepy. Then he called the family around him (my mum, my brother and myself) and told us to take care of each other. He was so weak we could barely make out what he was saying as the noise of the mask was louder than him but we got the message. Wednesday the palliative care team put a "driver" in for his medication as he had been taking them all orally until then. His breathing got really shallow that night. On Thursday morning at 11.15 am he passed away. And then the sun came out ( a rarity in Ireland let me tell you!) and we had the most beautiful 3 days of sunshine until the day he was buried.

The whole thing happened that quickly. 2 weeks before he died I never would've guessed that he'd be gone so soon. It hit me like a ton of bricks. I still have days where i forget he's gone. I'm so happy for him though. Its an ugly, horrible, unforgiving, humiliating disease. But I reckon that my dad beat it. It didn't beat him.

 

[Katie C]

Our journey was a little different because of the advanced FTD. He had said he did not want a trache or PEG while he still understood what it meant, so we honored those wishes but it probably wouldn't have mattered much because his level of compliance was very low. He had a bipap but wouldn't use it, tried to eat foods that weren't possible for him to swallow, etc. Although we thought we had it all locked away safely, he managed to get up during the night and somehow found an apple. He choked and several days later developed aspiration pneumonia. He almost immediately started showing signs of CO2 buildup and was very panicked if he tried to lay flat. So he spent the next few days in his recliner. He was getting morphine every 2 hours, his breathing was very loud. I called family and let them know things were nearing an end. This lasted about 3 days. And then he just stopped breathing. It was that fast. As others have said.. it's very different for everyone.

 

[Julie B]

I want to thank everyone for your replies. I asked my dad if he wanted to tell me something to respond to all of you, but he's a man of few words these days.

He called me last night, obviously in distress. Apparently, my mom was admitted to the hospital for some tests. They live about 90 minutes from the hospital, and too many trips is too exhausting for her, so her doctor scheduled the tests back-to-back, which required her to stay a couple of days. Her oxygen level is at 95% and she doesn't appear to have any breathing difficulties, but for some reason two doctors came into the room and suggested she get a trach. This really upset her, and for each doctor she would write on her whiteboard, "I want to die." There was a friend sitting with her at the time, who called my father and relayed this information, which got my dad all worked up. Someone finally contacted her doctor and he put an end to it, saying her oxygen level was sufficient and she didn't need a trach.

When she was first diagnosed, they immediately went to an attorney to establish Living Will and DNR documents. (They live in Illinois.) But I don't think my mother really knows what that DNR means. She thinks it will prohibit the doctors from doing anything "invasive." My father understands that she may eventually need a trach, even if she doesn't need to be resuscitated, but I think he's waiting for the doctor to explain the difference to her.

They wait for the doctor for most everything. If he doesn't bring up something, she won't ask, and she gets angry with my father if he asks a question before the doctor brings up the subject. It's a very difficult position for him, especially since he knows she's having dementia issues. He understands she doesn't want to do anything that will prolong her life, but he also wants her to be as comfortable as possible.

He did finally go to a support group meeting, with my sister and a friend. I think it was very helpful to him to be able to ask questions. The nurse who moderates the group offered to come by the house, but I don't know if that's happened yet, or if my mother even agreed.

Can anyone give me some insight about DNR orders as they pertain to ALS patients? Is it even relevant?

Julie

 

[tammyg]

I want to thank everyone for your replies. I asked my dad if he wanted to tell me something to respond to all of you, but he's a man of few words these days.

He called me last night, obviously in distress. Apparently, my mom was admitted to the hospital for some tests. They live about 90 minutes from the hospital, and too many trips is too exhausting for her, so her doctor scheduled the tests back-to-back, which required her to stay a couple of days. Her oxygen level is at 95% and she doesn't appear to have any breathing difficulties, but for some reason two doctors came into the room and suggested she get a trach. This really upset her, and for each doctor she would write on her whiteboard, "I want to die." There was a friend sitting with her at the time, who called my father and relayed this information, which got my dad all worked up. Someone finally contacted her doctor and he put an end to it, saying her oxygen level was sufficient and she didn't need a trach.

When she was first diagnosed, they immediately went to an attorney to establish Living Will and DNR documents. (They live in Illinois.) But I don't think my mother really knows what that DNR means. She thinks it will prohibit the doctors from doing anything "invasive." My father understands that she may eventually need a trach, even if she doesn't need to be resuscitated, but I think he's waiting for the doctor to explain the difference to her.

They wait for the doctor for most everything. If he doesn't bring up something, she won't ask, and she gets angry with my father if he asks a question before the doctor brings up the subject. It's a very difficult position for him, especially since he knows she's having dementia issues. He understands she doesn't want to do anything that will prolong her life, but he also wants her to be as comfortable as possible.

He did finally go to a support group meeting, with my sister and a friend. I think it was very helpful to him to be able to ask questions. The nurse who moderates the group offered to come by the house, but I don't know if that's happened yet, or if my mother even agreed.

Can anyone give me some insight about DNR orders as they pertain to ALS patients? Is it even relevant?

Julie

Part 1 Yes DNR. My dad had bulbar. The night he passed he had the papers out the day before for his lawyer. (He was selling his boat and changed his mind and added to his will for me)his girlfriend could not find the DNR papers right away. She was in kitchen with EMT"S. When I arrived 15 minutes after the "call" at 2an. It looked like a murder scene. My dad was a cop and it was like 10 cops cars, ambulance and like 3 fire trucks. I will never ever forget this night. He was upstairs on the floor, i thought. I ran up there against his girlfriend and hubby's saying NO!. He was not there and the ambo was pulling away. She showed the fireman who was sopose to relay it to the hospital and didn't. When I got there I had to stop them from pumping on his chest. and they bagged him. I yelled Please stop, he has ALS, the Dr. asked who I was ,I said his daughter and they stopped right away. THIS SHOULD HAVE NEVER HAPPENED TO HIM AT ALL! Upsets me 2 weeks before he fell and had bleeding in the brain, they seen the paper's then.

 

[tammyg]

Part 2... Moderators have Part 1 right now.
I read this article about a lady with ALS where she had it tattooed to the front of her chest in 4 inch letter D.N.R.. On her back was tattooed "Turn Over"
I will never forget going down my father's trailer a couple weeks later. His clock was stopped at 1:25...... He knew he was going, he went down his trailer thursday to take for sale sign off boat, went to change will friday. satarday he tried to fix front door lock and couldn't get it back on.His girlfriend called me and I replaced it. I took her to work(he always did)he was falling when he tried to get out of his chair). I went back to his house, we watched NCIS & CSI (can you tell he was a cop)He sat there for over 3 hours writting me a letter on this yellow pad. At 11 pm, he looked at the 10 page letter, looked at me and put it in the shreadder. I still have the shreadded letter. One day I will CSI it and put together if possible One of those fancy shreadders though that cuts it 20 different ways and was written on both sides. This will take a miracle to do though.
Sunday evening they went to a wake for a friend, me and my daughter stopped by Walmart to get him a mouth guard, he was breaking his teeth off. The house looked quiet, so I told my daughter we would come back tomorrow I knew he had a tough day and was tried. I wish we would have knocked. .......Sorry to ramble on....Good luck

 

[Mrs C]

A trach is a personal decision, not mandatory. My PALS is denying the trachea and any artificial means of support such as. For his comfort we now have Adavan and the bipap machine. When the bipap is not enough, we have morphine to keep him comfortable. There are options, don't let them tell you any different. Do your homework, knowledge is power! Good luck and God bless.

 

[Atsugi]

SOOOO many different experiences. So much to say. I hope something I add will be helpful to someone. Wish I could put all our lessons learned into a book for everyone.

But right now, gotta get a haircut and think about it. More, much more later today. --Mike