When you can't agree on when to let go...

[NKlein]

Hello, all,

Sorry in advance for the depressing post, but I'm hoping for a little bit of guidance.

I've been posting throughout Byron's diagnosis and treatment of his GME. He started exhibiting symptoms of GME very suddenly in October and since it is so difficult to diagnose, we didn't get a definitivie diagnosis until December or so.

Byron never went into full remission (e.g. never regained full use of his rear legs), but he did remain stable from Oct. - Jan. and was able to move around independently once we helped him up...so his quality of life was not great, but not bad. He seemed "himself" and had an easy time accepting his new life because he's so naturally laid back. However, he suffered a systemic infection during January and spent 2 weeks in ICU, then soon afterward his GME relapsed. Now he has absolutely no use of his back legs and no longer responds to any medication. He is getting worse slowly and now has lost all bladder and bowel control.

We went to see Byron's neurologist in Boston today, whom I respect a great deal. Our neurologist informed us that there is nothing more that can be done. The GME will continue ot slowly progress to his front legs, then eventually shut down his respiratory system (if he doesn't die of another infection first). I asked him what he would do if this were his dog and he said that he would go ahead and put the dog down. Byron is merely existing at this point and has no quality of life.

So to get to my point...I agree with the doctor. I have been Byron's primary caretaker for months now. I get him up and outside to potty (which is very challenging), I change his diaper when he's had an accident. I bathe him when his accidents are bad. I change his positions regularly to keep his sores from getting worse. My husband does help, but he simply feels inadequate when it comes to Byron's care.

But my husband isn't ready to let go. I am. I see how poor Byron's quality of life is and I ache for him. Byron is my baby and I love him so, so much, but I want for him to be at peace. My husband argues that because Byron is not in any pain (he's not) and is mentally 100% there (he is), he feels that putting him down is simply wrong.

I respect my husband's decision and will wait as long as I need to for him to become ready. But I personally feel that what we are putting Byron through at this point is...well, mean. I don't know how else to say it. I essentially told my husband that if he thinks we should keep Byron alive, then he needs to be he primary caretaker. I can't support keeping him alive like this.

This is such a difficult decision (and journey) for anybody involved. I know my husband and I are dealing with grief in our own way, but I feel like now we are starting to feel resentful of one another. He's likely resentful that I'm wanting to euthanize our dog and probably feels like I'm not as caring as I should be. I am resentful that he wants to keep Byron alive in his current state.

I guess I'm just wondering if anybody else has been through this? I always envisioned that D and I would lean on each other at a time like this, but now I feel like we're frustrated with one another.

 

[Tricia2]

I'm so sorry for your situation, it must be so difficult for you both. I had a terminally ill dog that I struggled with making the final decision. She'd have a good day and my spirits would lift but invariably it would be followed by a dreadful day. On the day I looked at her and realized she was bearing her pain for me, I called my vet. She gave this to me. Maybe it will help your husband come to terms with Bryon's condition.

http://www.newf.net/Forums/showthread.php?t=84915

I wish I could hug you, but I'll send this from not so far away....(((HUGS)))

 

[cedarvalleynewfoundlands]

I am so sorry for everything you are going through. I just recently made the hard decision to put one of my girls down. I too kept on putting it off, hoping that something would change, and unfortunately for her, it never did. The best advice I ever got was from my vet. He said the goal for her should be to put her down on her last good day, which is hard to do. I didnt want her to suffer, but i feel like I let her down by letting her go a couple more days than I really should have. One thing that helped me is when I looked at her and said "If this were ME, would I want to like like this?". The answer was an unequivical "NO", and I brought her in the next day. Its hard to remember some times, but letting them go is the last act of love and kindness we can do for them. My thoughts and prayers are with you as you go through this hard time. I wish there was a magic way to make it an easier decision for you and your husband.

 

[R Taft]

Aww Nicole this is such a hard thing to go through, I don't know how to help you. All I can do is agree with you that he should at least 50% of the care to Dear Byron. So sad that he is having such a hard time with it. But I have seen many people grieve in different ways. And that is the barrier you have hit.
I have to admit that when dogs have lost some of their independence and become incontinent, we have usually helped ours across to the Bridge. Because I still believe in a quality of life. Pain is hard to judge in a dog. Some dogs are very stoic and it is hard to tell pain.
I have never been in your situation as we have always agreed when the time comes. How does your vet feel. is he able to guide Dan at all.
All I can say is that I am thinking of you during this difficult time :hugs: Ronnie

 

[twright1231]

So sorry Nicole. You are right, everyone deals with grief in their own way, as it should be. But caretaking at this level is extremely hard for one person to handle, not just physically, but emotionally too. I haven't been through this with a dog, but I have been through this with a human parent.

Help each other understand that each of you only wants whats best for Byron, even if you see things differently. Ask each other to see things from the others point of view. Hold hands when you talk about it. It's hard to get mad at each other when you're holding hands. Hopefully Dan will be able to help you more while the two of you are deciding how to handle this.

You all will be in my prayers.

 

[Cascadians]

Oh yes I have been through this, for decades, with humans. I am a hospice caregiver. I have experienced both sides.

Total care is exhausting. Utterly exhausting. Nobody can do it alone for long and preserve his sanity or health.

Part of quality of life is exerting our will, moving around, doing what we want. Each individual will decide when his quality of life no longer is worth staying in a physical body on planet earth. Unfortunately most humanimals do not prepare for having a say in when and how they depart.

It is such a hard decision, because death is final for physical love and presence. The end of an incarnation is very hard on the survivors.

However, total care is impossible for the caregiver for a long period of time.

Here's what you need to do: Enlist your husband immediately to be your partner in Byron's care. He needs to be gently turned over every hour, and his legs repositioned. He needs petting and massage to keep his skin and circulation going. He needs his mouth wiped every hour with a moist cloth, and his behind and urinary area kept clean and dry.

You have a couple days to explain how you feel, the disease, and the concept of quality of life to Byron, and most important your great love for him. This is a degenerative disease and will keep getting worse. Explain that to Byron and tell him you are going to show mercy to him by ending his stay on earth before it becomes unbearable, by stopping his body functions. He will go back to where he came from and be free and happy and whole. And you will be reunited: true love is eternal. So you have time to get your husband to help you and help you explain and say goodbye to Byron.

If you both hands-on care for Byron now there will be no time for resentment, and hands-on 24/7 bonds and brings understanding and compassion and the realization that letting go is the most merciful gift one can give in this type of situation.

 

[NKlein]

You are all amazing and so sweet. Thank you so much.

Tricia, thank you for that post--I will read it with D tonight.

Mary, your post really struck a chord with me because you specifically mentioned feeling like you'd waited a little too long. That's how I'm feeling now. Byron does have some "better" days and I know those days make it tougher, especially for D. Our neurologist said the exact same thing...that he feels if we continue on then we'll likely feel we waited too long. I think it's hard for D to see that when he's clinging on to the good days, or hours, or minutes.

Ronnie, thank you so much. I also take quality of life into account and know that Byron is merely existing at this stage. He's even regal when close to death and it breaks my heart. I truly believe that Byron is an incredible dog, a dog who deserves so much more than the life he has right now.

Tracy, I really love what you said about the fact that both of us are wanting to do what's best for Byron...we just don't agree on what that is. I think it's important that I let D know that I know his heart is in the right place. I am definitely going to preface our conversation tonight with the fact that I know he's doing what he thinks is right...I think reminding ourselves of that will help us to feel less defensive. Thank you so much.

ETA: Cascadians, your post brought tears to my eyes. I will enlist more of D's help...I think he feels insecure about doing things wrong, so I need to make sure he knows he's doing everything right and that it means a lot ot Byron (and me). I will also use the next several days so that my husband and I can adequately say goodbye to Byron. We both need that. I've been essentially trying to "hide" anything from Byron...I don't want him to feel bad about soiling himself, don't want him to think he's done anything wrong, so I try to be cheerful around him to keep his spirits up. But now I think I need to go ahead and let it out a little. I need for him to know how much he means to me, how he will always be my baby. I need to tell him.

 

[R Taft]

:hugs: :hugs: for you both Ronnie

 

[lilly06]

I am so sorry that you and your husband are at odds in making a tough choice right now.

We had many surgeries and complications with my Newf Lilly over a course of a year. Soon after the final failure, I kept asking how much more can she go through. We decided that another surgery was not an option. She was not able to walk on her own. We had to use the sling for potty breaks etc. Everytime she needed to move we were there for her. I could see in her eyes that she was just tired. I also knew that she was not going to get any better. Newfs are so stoic it is a very very difficult decision to make. I kept asking myself what is the quality of life for Lilly. We loved her so much and I did not want my own selfishness to play a part here. In the end we let Lilly cross the bridge and run free.

I am sure that you and your husband will come together in the best decision for Byron.

 

[ArtfulCharm]

Leska, your post brought tears to my eyes too.

Nicole, I don't have any advice for you better than you've gotten, but my heart is breaking for you. I'm so so sorry you all have to go through this.

 

[Newfs Forever]

Nicole,

You have my heartfelt sympathies. It is always so so difficult.

I guess I have always asked myself when faced with these decisions: Is there quality of life? Are you keeping he/she alive for yourself and not for them.

I wish you the very best. Sending many many good thoughts and many many prayers.

 

[sendchocolate]

Nicole, I have little experience with this, as my 12 year old mixed breed dog from 4 years ago was dying from cancer and we really had no choice. But I wanted to say, I am sorry, wish you all peace. I want to encourage you and D to try to go easy on one another, because you are both hurting. Take gentle care.

 

[victoria1140]

when Maddy our jrt was diagnosed with congestive heart failure I did all the research possible and ended up telling Malc she was now on borrowed time. We had lived with her incontinence, blindness as she was still able to move around happily and eat when she wanted and sleep on her blankets.

/once she started to develop the pot belly look we started to make a memory box of her and talking about her final days so we had it out in the open. Malc had to make the final decision as I didn't want him feeling guilty about letting her go. One day we looked at her and even he said it was time. She was happy to go and even though she hated the vets she never flinched with the final injection.

If possible can your vet come to you at the end as I still wish I could have spared her the final car journey , make your memory box now, talk to bereavement counsellors if possible and enjoy your quality moments together as its a difficult time for everyone

 

[jacqueline]

nicole, i know how difficult and heartbreaking this time is for you all, i will keep you all in my thoughts and prayers,
jacqui,x

 

[padkins]

:hugs: Sending hugs, thoughts, and prayers to all of you during this difficult time. :hugs:

 

[Bella and Gabe]

Nicole, your situation with Byron brings back memories of my husband and I dealing with a similar situation with two of our past Newfs. I do understand how you both feel and both of you have very legitimate concerns. There just isn't a correct answer. Leska's reply and experience is one that not only brings tears but offers great wisdom and experience.

You and Dan are truly in my thoughts, my heart and my prayers as you make Byron's journey to the bridge as comfortable, humane and loving as possible. This is not only a physically demanding time, but more so and most importantly and emotional time. You are loving, caring and holding memories of a wonderful living being.

I applaud you for your strength, courage and love. I know too that what you really want to know is how to know "when." All I can say from my experience is you will. And you and Dan will agree.

In my heart I'm sending you hugs and love. Again, Leska offers experience, advice and the words that I lack.

 

[charlieinnj]

You're all are going through such a horrible time. I'm wondering though....Has Dan personally gone through this ordeal before or is it possibly his first time facing this?

 

[mulenag]

I'm sorry Nicole. My hubby has different thoughts than I on this subject too.
Quality is always more important than quantity. I have a canine cancer book that I *love* and it helps you to determine what quality is for your dog based on what brings joy to your dog and whether or not your dog still finds joy from those things. Here is a link to a shortened version on the author's blog. It may help your husband.
http://tinyurl.com/6h8s3k6

My thoughts are always with you and Byron.

 

[Ginny]

My heart is breaking for you. Have Dan read this thread...

 

[NewfMom]

I'm so sorry for you. We agonized like this with Moose. Luckily he was a lab-sized newf mix or I don't think we could have cared for him as long. He was incontinent for months and months, maybe a year. He couldn't move much at all for the last several months. In spite of it all he was happy except when I had to bathe him in the tub or when he went for his weekly catheritization to treat his intractable UTI. His care was very difficult but we couldn't let him go while Moose still felt like he had a good life and he always seemed to. Eventually he lost the ability to release urine and became uncomfortable. At that point it was time and I was the one who said enough. I had been almost ready to do it earlier out of sheer exhaustion.

I can't imagine how you are managing with Byron to do all his care. I can see what your husband is saying when he sees that Byron is not in pain. One thing that may help you is to talk about what you both think Byron feels his life is like. If Byron is happy that is one thing. If Byron is exhausted or unhappy then you are in a different place. I wish you both all the best as you both try to find what is right for Byron.