Found out my wife's Neurologist doesn't want to see her again.

Dear @tunared,

I am very sorry that your wife may have entered another phase. Many such transitions happen without us really noticing' we tend to lag in our assessment of their progression. It is often an external event that shocks us into realizing that our Person is farther along than we have been realizing. None of that addresses the emotional impact when we are faced with a new, undesired reality. Be gentle with yourself in this time. Allow yourself some private time to process the this, and time to share it with a key friend or family member -- one who will be support you emotionally, not just rationally.

So sorry also for this absolutely not nice way in which this neurologist told you about a significant milestone that she thinks your wife may have reached. You and your wife deserved better. I am not trying to add resentment to your current emotional load, but also know that you both deserve a very different kind of doctor going forward.

Once you have started to address your own grief, I would recommend that you take stock of your objectives going forward.
- I used the term "may" in the sentences above, not to give false hope, but to emphasize that you may well benefit from a second opinion. You would at least get a real discussion with a medical professional.

- I'm not sure what goals and what course of action were being pursued till now. If it was reversal or halting of the disease with pharmaceuticals, the options are limited and may have been exhausted. I also don't know the current state of contentment or physical comfort of your wife. I will assume that your objective is to maximize both going forward. Looking through that lens, then the cavalry may indeed be coming; it may just be bringing different protection.

There are so many things that can and should be done for our loved ones to make their hours and days as filled with love and care for whatever remains of their life. They may seem slight in comparison to medical breakthroughs, but they are immense in human terms. Focusing on that value and your unique ability (with assistance!) to know and provide what your wife needs, can make the next phase a source of joy and pride for you. I absolutely do not mean to imply that your wife's decline would bring you joy. There is certainly sadness in every loss of capability and wellness. But research shows that Joy, unlike Happiness, can exist in the midst of suffering. Being there for our loved ones can have that outcome for us and for them.

There is a documentary about a pilgrimage that Andrea Bocelli and his wife make in Italy on horseback. At one point shortly after they set out, she says to him that she is a bit apprehensive, as she has not made such a journey before. He says to her "Don't worry. I will be at your side". When I heard that I realized that those are the best words that one can hear from someone else. Even better than " I love you" . In a difficult time, with uncertain duration and conditions, knowing that our spouse or friend or a stranger is committed to accompanying us through it all will mean the world.

Forgive me if any of this is inapplicable to your situation. I wish you the best.

Danl,
I'm so sorry you are getting such negative messages from your wife's doctor. The doctor should have told you both in person herself! However, before you go to pallative care it might be a good idea to see another doctor just to be sure what the diagnosis really is.

My husband had lung cancer. They sent him to pallative care when he refused to have anymore Keytruda or Chemotherapy treatments because of the terrible side effects he experienced. Pallative care is for those who are dying. However, my husband lived another 10 years!

Also give your problems up to God. He will direct you and your wife in the right direction. I'll say a prayer for both of you.
I wish you the best.
PML

@memoriestomoments
I too will be by my spouse’s side, but I also sometimes feel the child’s “what about me?”. I and many caregivers will be alone for our final chapter, we’ll be “depending on the kindness of strangers”.

@pml

I just wanted to clarify something about palliative care. It is very different from hospice, which is prescribed for those who are no longer treating a terminal illness. Palliative care is sometimes called comfort care. I have had 3 relatives in palliative care and all 3 lived many years beyond entering that level of care. For my husband, one of the pieces was balancing eating food he enjoyed with the risk of aspirating. We learned strategies that allowed him to live a life with some enjoyment rather than being so strict that he had nothing to look forward to. The focus was on a higher quality of life and that was a relief to both of us.

I hope you find the same level of help that we did.

So sorry! We had a neurologist that did not care what was said or what can be done to make it better! Apathy vs Empathy. It is so sad to see this happening. My feeling is the world has changed and very few in the medical field have empathy with anyone who cannot understand how it feels to be dismissed and just do this or that! The end comes for us all. We deserve dignity. I hope your spouse gets nurses and others in Hospice that listen and are compassionate! We all deserve to be treated with again, Dignity!🫂

@memoriestomoments
thank you for your kind comments. As I mentioned before, we have met a palliative MD, she was nice but what she told us was nothing we hadn't heard before. The last time we met her neurologist, I questioned her when she said my wife was in "END STAGE" dementia, and asked her to explain that statement. the MD stated that 99% of the people with dementia who have had the disease for as long as my wife are dead. That shook me up and thank God my wife didn't comprehend what the MD had just stated.
We have already tried all the current pharmaceuticals without much luck.

@jehjeh Thank you for clarifying that. We only saw the pallative doctor once and all he did was talk about dying so I thought that was what it was all about. My husband lived another 10 years. He died in 2024. I'm glad that your family members and your husband benefited so well from pallative care.
PML

@centre
I know what you mean. (We don't have children-- not that that would be any guarantee of assistance. )

But overall, I just don't think ahead that far. Being more grounded in the present is one of the good things that my husband's Alzheimer's has given me.

I go back to Google fairly often to find this quote: "Worry does not empty tomorrow of its sorrows. It empties today of its strength."

But maybe we have a genetically influenced worry "set-point" I know that my mother was a worrier. She had a difficult life that repeatedly gave her reason to be so. Perhaps in response, I willed myself to put all of my energy into solving or avoiding problems instead. Or maybe it was genes from my father's side: They divorced when I was very young, probably because he did not take things seriously enough. 🙂

Wishing you peace of mind.

I'm finding that same situation caring for my mother. Sad to say, but doctors don't want to see/care for "problem patient". I have been told privately by nurses, that they "pass the buck" to any other doctor but themselves. To clarify, not all doctors but most won't see a person with Alzheimer's, or Dementia if they can get around it. My mother was involved in a car accident leaving her with hip and back pain, and even the pain management doctor stopped returning our calls for follow up appointments. The medical system has left a lot of very jaded toward them.

@pml
I understand. Your experience sounds similar to ours.

My DH and I first met with 2 people from palliative 3 care years before he died. They, too, only talked about end of life issues. After that he refused to meet with anyone affiliated with palliative care, and I felt the same. It was depressing.

I finally spoke with his PCP about the experience and he referred us to someone who had a different focus. In front of my husband, we all used the term"comfort care" and the doctor was lovely. I started the conversation by telling her the things I wanted to address. (Husband not being moved from bed to chair enough, not eating because diet was too restrictive...) She also helped me when he was hospitalized, making sure I had everything I needed.

I think doctor's believe they are ordering one type of care but specialists, unless they are told, use their boilerplate pitch which was just depressing.

I hope this helps others who may have this experience.