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zoohouse 05-11-2015 04:02 AM

I'm having a hard time with this next step.
I have been fairly quiet on the forum lately, as I have been keeping myself very busy, so I don't have to think. We have our routine down, to the point that I can just about do it in my sleep, and our life has been feeling so "normal." Tim has just about all the equipment that you can get, and we have everything set up so that I can manage him easily on my own even though he is completely paralyzed. Up until this last month he seemed to have hit a plateau and I was able to forget, for a while, that he has a terminal illness.

But lately he is having a lot of difficulty swallowing, and has to be at just the right angle so that his head doesn't fall forward, and he has it far enough forward that he can swallow. He has been singing in a band if you can imagine, and loving life to the fullest, and that was not a typo. But one month ago after a band practice he couldn't swallow at all, and his voice was very weak. He became quite frightened to go to bed, but after taking his atropine and waiting he was able to settle into bed after an hour. I told him that he had tired himself out, talking and singing, and if after the next practise it happened again he would have to give up singing. Well unfortunately he has had to give it up, and in spite of that I have noticed a change in the quality of his voice. All his food is now blended, and I am organizing the equipment to start tube feeding him.

Through all of this he has maintained the most amazing positive attitude, always quick to point out the beauty around him, joking around, and never forgets to say thank you to anyone that helps him. He has touched so many lives that there are only 2 days in the week that we don't have someone over to visit. But he is getting more tired, so I have had to stop the practices at our home, and cut back on some of the visitors. In the last 2 weeks we had 2 very close calls were we could have lost him, and the worst one I was responsible for.

We were just getting ready to go out and shop for plants and I told him I was going to go dry my hair then we would leave. I usually have him with me, but I was only going to be a few minutes. Well just after I left the room he pulled his head forward to swallow and it fell forward, and he missed his mouth piece to his ventilator. He tried to call me but I didn't hear him, and then I turned on my blow dryer. I couldn't hear the alarm on his ventilator going, until after I shut off the blow dryer. As soon as I heard it I ran to him, but his head was slumped forward and he was blue, but thankfully still conscious. I put the mouth piece in his mouth and he took a breath, and very slowly started to pink up. There doesn't seem to be any lasting ill effects except that I was in tears off and on that entire day, and have been on the verge of tears ever since. I can't ignore that the end is coming, and even though I have a strong faith I am dreading what is coming next, more than anything else in my life. I have had a lot of losses, but he is my light, my love, and my life.

I have been a demon in the garden, working until I can hardly move because I know how important it is to him to see it all completed. I have come here to reach out to all of you that know what I am going through, for comfort and prayer.

I am sorry this is so long, it is just that I have been holding a lot in for so long, but I just can't any more.


Green Queen 05-11-2015 04:14 AM

Re: I'm having a hard time with this next step.
Paulette, if I could be there in person to comfort you, I would. Please know I'm giving you a virtual hug.
I don't really understand the pain you are going through, but Tillie, Atsugi...there are so many people here that will have the right words...who can help ease your pain.
Also was not your fault. No, it wasn't. At all.
You are in my prayers.
God bless my dear friend, Janelle x

affected 05-11-2015 05:05 AM

Re: I'm having a hard time with this next step.
Oh Paulette

For so long I have admired you and Tim. It's hard to describe that in all the FTD I went through, one of my biggest comforts has always been couples like you and Tim that somehow rise totally above. It's like a dream I could slip into to escape the horror of losing the person I loved long before he died.

You have made it possible for Tim to live every single part of the life that was important to him to the very fullest and yet you have not felt compromised, but have also been enriched in return.

The reality of the terminal nature of the disease is just so hard to accept, and I am feeling such a sorrow for you as you watch this next turn downhill in Tim.

I never got much time to just enjoy, not just for the FTD, but the incredibly rapid progression that we had.

I so felt your heart in that line that you were able to forget for a while that the illness is terminal. I am so glad you were able to say how much your heart hurts. We do understand this, even if we all have our own slightly different situations.

I'm so glad you turned off the hair dryer in time, because you would not have been responsible for the disease taking him, but you would have always blamed yourself.

I truly hope that you can move through this stage to an acceptance of what is coming, and I know that no matter what, you have been the only person who could have given Tim what you have given him during this illness. Not just the personal care that you so excel at, but at loving him and allowing him to blossom through this extraordinary circumstance. No guilt, no regrets, much true love.

Hugs my sister in pain,

Nuts 05-11-2015 07:10 AM

Re: I'm having a hard time with this next step.
Paulette, you and Tim have been such role models to me. His jest for life and the care you take, the way you live life with him, well, I work very hard to live what we have as you have. The mental image of him riding the trails in his PWC has often guided me when the instinctive desire to smother my husband kicks in. My heart aches for you, as well as for all of the lives the two of you touch.

Please, please, please let that idea of guilt go. You couldn't have known. I'm so grateful that you got to him in time so that you don't have to carry that thought with you. You are a phenomonal caretaker and wife. I don't know how I"m going to deal with what you are facing now, I don't allow myself to go there very often because it robs me of today, but I hope that when I pull myself out of the grief that I can look back and say that I, too, did everything I could to make my husband's life everything that he desired on this journey, as you have done.

My brain is about to speak, because my heart would destroy me if I allowed it to take over, so please feel free to scream at me if I'm wrong. I think what Tim might need now is to know that you will be ok and that you will live your life after this is over. That might be the last gift you'll be able to give him.

Don't hold it in anymore. If you have the energy, let us hold your hand and be here with you.
No appologies. We're here, and we love you.


cheerleader 05-11-2015 07:23 AM

Re: I'm having a hard time with this next step.
Dear Paulette, you and Tim have shared a good and loving life together - and ALS can't rob you of that.
Yesterday the Mother's Day sermon at church was about love. One of the stories the minister told was about a woman sitting by her dying husband's bedside, having helped him sit up and support his head, and holding his hand. That has been our journey, hasn't it, dear Paulette, as we show our love by our presence and support. The tears didn't stop for me as I sat there remembering and being glad I had been his hand holder and rock. That is what you are now, and will continue to be as long as he is here with you. As Tillie said, no guilt, no regrets- hang onto the knowledge you are doing the best anyone could do for Tim. Wrapping my arms around you in love. Donna

MaxEidswick 05-11-2015 08:37 AM

Re: I'm having a hard time with this next step.
>He has been singing in a band if you can imagine, and loving life to the fullest, and that was not a typo


thoughts with you ...

bigmark1954 05-11-2015 02:02 PM

Re: I'm having a hard time with this next step. sad to hear what you and Tim are going through. My heart hurts for you guys. The harsh reality of this journey can be brutal, and we all share in that with you.
When I first came on board, you were the voice of a strong and logical person. We have all missed you, and thanks for catching us up on your challenges.:)

nebrhahe53 05-11-2015 10:07 PM

Re: I'm having a hard time with this next step.
Paulette, I am so sorry for you both. To have the positive attitude he's had given where he is is to me amazing.
I hope you can find healing in all the memories you have shared together.

Barbie 05-11-2015 10:07 PM

Re: I'm having a hard time with this next step.
Paulette, that is what we are here for--you don't have to carry all that pain and worry alone. we all love you and support you. Please don't blame yourself for the mishap the other was a close call but no one was to blame.

I know what you mean about feeling "normal" during slow progression or plateaus. You get a chance to pretend that nothing will change and you get comfortable with where you are at. it is like we are so desperate for any spec of normalcy that we ignore the truth of the situation.

Tim is an inspiration to so many people, and your love and support allows him to continue that-- now, and even after this is all over.


lgelb 05-12-2015 12:44 AM

Re: I'm having a hard time with this next step.
Paulette, you're a nurse so you know you're not "responsible" for any disease or what it brings. You will make sure that Tim has a peaceful passage, so you don't need to worry about that, either. I know that you have had many losses in a short time, and I wish you didn't have to face this one, but you, Tim's family and yours have all gained much as well.

Having been privileged to meet you and Tim, I know that if he died tomorrow, one of his last thoughts would be of his great fortune to have spent these years with you, whether the garden was finished or not.

Let me know if I can help.


anderkling 05-12-2015 01:02 PM

Re: I'm having a hard time with this next step.
Praying for you and Tim. From all you have written about him, he is a remarkable man, a radiant Christian. So are you, Paulette, in your devotion to Tim on this journey of losses and sorrows. You will have grace for the next steps. God is with you, holding you. Do not fear. Praying for peace, grace and comfort for you.
- Charlene

skipper66 05-12-2015 03:17 PM

Re: I'm having a hard time with this next step.
You and Tim are in my thoughts and prayers. Please don't blame yourself for the incident the other day. It wasn't anyone's fault. It was a accident and luckily the outcome was ok in the end. You and Tim are wonderful to each other. It is a good example to all of us. Love, Kim

gooseberry 05-12-2015 07:51 PM

Re: I'm having a hard time with this next step.
Thinking of you Paulette. Hugs, Steph

JimInVA 05-13-2015 12:35 AM

Re: I'm having a hard time with this next step.

So good the hear from you... and so comforting to hear what you two are experiencing. That sharing does two things for us... (1) it gives us something to compare against where we each are on this journey and (2) it gives us something to consider that we might be able to offer some help with. We ARE family... and sharing is what gives us each the strength to make it through another day.

Darcey's Dad (89) passed away yesterday afternoon. He died peacefully with his wife of 50+ years holding his hand... and with a granddaughter also present. For the last week he was surrounded by loving family and shared some part of himself that was unique to the family member that he was conversing with. To me he said, "Jim... I'm so glad it was you who married my daughter. You have been a wonderful son and I can't tell you how much I appreciate how well you take care of her. Thank you!"

He was a remarkable man. This morning I told Darcey. "I want to die like your Dad did. I want to be the person for whom people don't cry sad tears because I'm gone... but instead, cry with happy tears for having had the privilege of having known someone who added to their lives. Dad's death was a good death. He died peacefully, without pain and with a smile upon his face. And he positively influenced many lives." Yesterday afternoon was a day filled with clouds and darkness. Yet, a couple of hours after Dad's passing... and after his Episcopal priest arrived to say a few prayers on his behalf... a hole in the clouds opened up. Through that hole the sun shone down... and caressed Mom's shoulder. It was as if a hand came down to comfort and suggest all was as it should be.

Like Tim, Darcey still feels she has life yet to live. Each day becomes more and more of a challenge, but we smile as we take the day on with whatever it decides to bring our way. And having shared in her Dad's passing, we're more certain that there is something after this life that is worth moving to when the time is right. And somehow we find comfort in that... even as we work diligently to spend another day, here and now, with each other. Life and its conclusion is still a mystery to us. But we find ourselves less afraid as we move closer and closer to Darcey's last day.

I don't know if there is anything in what we're feeling, experiencing and doing that helps you and Tim on your paths... but know that we are with you and that you are not alone on this ride. We didn't ask for this but we will laugh in its face as we stagger, trip and sometimes fall while on this journey. And I understand the trepidation that accompanies a near miss... as we've had them, too. The best we can do is get back up, try not to repeat the error in our ways and work to make tomorrow as good as we can. In March, Darcey's neurologist stated that he believed we were within our last 6 months.. We look at that and say, "Maybe..." We'll let you know when WE think that we've arrived there and that we're ready to relax with hospice. But until then, we've still got things to find a way to do. Yep... we're looking forward to seeing him again next month.

If you even need someone to just lean on... or share with... let me know. If you can't PM, I can. If you need a Facebook friend, I can provide that. If you need a phone number to message with or call, I'll share that. Above all, know that you have "family" here and you are not alone. You are a ROCK STAR! Keep on keeping on!


zoohouse 05-13-2015 04:30 AM

Re: I'm having a hard time with this next step.
So last night I had just settled Tim and came to write, "We had a much better day today" when I heard my name being called by Tim. He sounded quite frantic so I got there quickly. We had had a great day having physio, and did manage to get some chores done, one of which was visiting our hardware store for parts for our new garden shed and something to fix a leaking hose. We love visiting the Canadian Tire store,(interestingly we met the owner last year at one of our monthly ALS meetings, he too is among our ranks) and I must admit that I am a tool addict. When we got home one of our favourite young church friends had been over and cleaned the house, and left homemade soup on for us. Who could ask for more? We ate and watched a movie, but both of us were a bit gassy, most likely from the Broccoli soup. Tim had his usual nightly BM, but said he just didn't feel great, like he was bloated.

I digress. When I got to him after he called, he said he thought he was going to vomit, and was salivating. My brain kicked right in to nurse mode, and I decided to drain his stomach via his MicKey and got only the water and medication that I had given him back, as well as a little air. He didn't feel any better but I knew at least that there wasn't anything to come up, so I got him up back into his chair, and on his ventilator rather than his full face mask. I held him forward while he spit the extra saliva, and alternately gave him his mouth piece for a breath. He asked me what I thought could give him pain in his right upper abdomen that radiated into his back, and I told him it could be his gallbladder. I didn't tell him that it could be a dissecting aneurysm, but I truly thought it was his gallbladder acting up from the rich soup. He then had to have another BM, and while he did that I visited my drug cabinet and found some gravol, tylenol #3, and something called buscopan a smooth muscle anti-spasmodic)that I use for when my gallbladder gives me grief. I know that we should not share prescriptions, but having worked ER for over 20 years I knew what he would be given. I crushed them up and put them in through his MicKey with a bit of water, and brought him back into the bedroom beside my bed to watch. In about hour his nausea went away and his pain went from an 8 out of 10 to a 2, so I felt it was safe to put him back into bed on his bipap. I went to sleep, and it was 3:30 by the time I could get to sleep.

We both decided that Tim would not be able to vomit as he no longer has any abdominal muscles to push it out, something I had been wondering about only the day before. We were really grateful that it settled down, and I didn't have to take him to the hospital. Today was another amazing day and Tim said he felt amazing. Nothing like feeling sick to make you appreciate good health. We also decided to slow how fast he receives a breath from his ventilator so that it was less likely to blow saliva or anything in his mouth into his trachea, and Tim said it has made a big difference. We had it set fast so that he could sing, and carry a conversation, but now people are just going to have to wait for Tim to get a full breath before he talks.

I also got my mother's day present today, a chipper shredder. We went straight to the back and shredded the waist high pruning pile, ending up with fabulous mulch. We were both looking around for more to shred, and Tim spotted a decent sized branch on the pine tree that might just get in the way sometime, so I lopped it off and fed it into the shredder. It was one of the most satisfying things I have done in a while, like I was shredding all my frustrations and worries.

So there is another episode in the day and life of Paulette & Tim. I have to say that I am feeling so much more at peace, and I know it is because of all the support that I got here, and getting these things off my chest. Thanks everyone, God bless you all.


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