1. < Caregivers: Dementia
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Found out my wife's Neurologist doesn't want to see her again.

Posted by DanL @tunared, Feb 17 5:57pm

I called my wife's Neurologist (been seen by her for 4-5 years) to find out when her next appointment (it's been about 8-9 months) will be and left a message at the hospital. A nurse in the department called back and asked about my wife's current condition. I filled her in and she said she will pass the information to the MD. I get a call back in about 30 minutes and was told to contact a palliative care doctor (my wife saw her once a year ago). I guess thats a nice way of telling me that the neurologist can't do anything more for my wife. AND THE CAVALRY IS NOT COMING 😥

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kjc48 | @kjc48 | Feb 20 8:37am
In reply to @memoriestomoments "Dear @tunared, I am very sorry that your wife may have entered another phase. Many such..." + (show)
Profile picture for memoriestomoments @memoriestomoments

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.

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@memoriestomoments Gosh there you go again, you helped me in my posts, and your above post is so wonderful, gracious and a call out to all of us to remember, as we progress through this, we often can't see what other see. It's sad to think a doctor's md would tell a patient's husband that but it sounds similar to a friend of mine, who ended up getting hospice in to enhance the quality of her care, and make her more comfortable, during the day, when he was in so much denial over her progression. "I will be at your side" leaves me me in awe because I can't think of a better thing to see as we, as caregivers, are going through this.

REPLY
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labrown | @labrown | Feb 21 6:43am
In reply to @memoriestomoments "Dear @tunared, I am very sorry that your wife may have entered another phase. Many such..." + (show)
Profile picture for memoriestomoments @memoriestomoments

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.

Jump to this post

@memoriestomoments I love that line…He says to her "Don't worry. I will be at your side". When my hubby is feeling very confused and unsure of something that is what I try to remind him of…that I am there and I will take care of him.

REPLY
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