This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.


Friday, August 15, 2008


When I got up this morning around 6 the dishwasher was still warm, so John must have finished loading it in the middle of the night, after sleeping in a chair for a while. He went to bed sometime after I got up. I got home from running and took a shower about 8:30 and he asked me what time it was. I thought he was getting up but when I went back to the bedroom an hour later he was asleep with a pillow over his eyes. I went to work then so I don't know when he got up.

In one sense it isn't a sleep problem because he isn't tired during the day. But he is sleeping later and later, which gets in the way of his being able to get things done. The exercise class he liked was at 10 am and I don't think he has gotten back.

The specialist said John shouldn't watch TV late at night because it would draw him away from sleeping. John said he doesn't have any other time to watch TV, since I don't like it on. The specialist said "Surely there is another solution for that."

I'm not sure whether to take the attitude that now he is retired he can follow any schedule he wants or to worry that increasingly disorganized sleep patterns will lead to problems.


Renata Rafferty said...

I'm a few years farther down the road than you are on the Lewy ride, and I think I've learned a few things along the way that might be of use to others.

If you love John, screw the house and all the other crap for right now. If you like John, spend more time playing together while he still can.

There will come a time, maybe in a few years when he really will be unable to manage as an independent individual, when your life will get easier in one respect. You'll realize you have no partner to confer with and (like it or not) you get to have everything your own way. Ain't nobody else to help -- or criticize.

As for your teaching job, you need to face some facts that I didn't. Day by day, more and more of your time and energy will be required to keep John engaged in life.

You'll feel caught between your professional obligations and the man of your life. If you must work, get someone in NOW as paid help. Don't keep putting it off like I did, thinking we really didn't need an outsider "yet."

Jerome's LBD took such a fast and unexpected early dip that I had to halt all professional activities - most of which required travel -- in order to be here for Jerome's safety. That shut off our income and led to a collapse of our financial stability. All for lack of my not having thought to get some help in LONG before I thought we might need it -- that would have given me the time to slowly and wisely wind down my professional activity.

Do you really think you'll be able to go on teaching through this? I was certain that I would simply do more writing, tele-consulting, etc. from my office in my home. I didn't count on being exhausted, being available only uneven hours, or how much I would want to BE with Jerome rather than be in my office because his good days or hours or minutes are so spectacularly special.

LBD has disabled Jerome's wake-up mechanism. His body does not receive a signal to wake up. I wake him mid or late morning to give him a pill to wake him up (sounds like a bad hospital joke).

We eat together, and then Lewy-related post-prandial hypotension takes over, making Jerome weak and faint, and he must go back to lie down for an hour or so. Many days his body simply has to sleep 14 to 18 hours.

John may not even realize he has no control over his sleep patterns -- but you need to. John's not being a "bad boy," he's doing the best he can with a brain that has been hijacked.

God bless John that he will spend hours trying to load/unload the dishwasher. It may be one of the few ways he feels he can pitch in to help, no matter how hard it is. And you want to cut his knees (or other parts) right out from under him for wasting time.

Let him watch all the TV he wants, whenever he wants - because eventually his brain will stop being able to absorb and process even the most simple program. And though his eyesight might not suffer, his brain will stop interpreting visual input signals properly. Reading will be out at that point, too.

Help him soak in as much of the world around him as he is able to -- it is the reserve that will see him through the period of transition into that time and place where all activities that were meaningful to him will be gone.

John is not your enemy, he is not trying to be difficult, load all the work on you, or anything else that petty. He's also not your partner anymore -- he is literally losing the capacity to be that.

Pam, this is a time that is not all about YOU. It's not even partially about you. Your man is dying, your brilliant man's mind is dissipating. He just wants to hang onto the world as he knew it. He really doesn't need any "grief" from you -- you can't even imagine the grief (and fear)he is struggling with.

Again, Pam, this time in your life is not about you. I'm the same age you are and Jerome is 75. We've been married over 20 years and we NEVER expected this -- no family history, nothing.

The fact is that you and I both will have many years left after our husbands die. And then we will be free to do/be anything and everything we choose -- we'll have the freedom to be TOTALLY selfish (boy, some days I dream about that!).

This time is about him. He is dying. He is trying not to die.

If you truly love John in that rare, raw way that too few of us experience, you will do everything in your power to be the woman he needs. It is not for him to be the man YOU need ... he is incapable of being that, through no fault of his own.

But if there were already unresolved tensions in this marriage before the dementia, LBD will likely only aggravate what was already there.

Living the next (unknown) number of years in anger, resentment, bitchiness,feeling overtired, overworked, under-appreciated, under-cared for will kill you both.

Don't do this to yourself or to John. Really examine the secret corners of your soul. If you don't feel a deep and palpable love for this man, you will not make it through the coming years. And your children will go through hell. You can't make yourself feel something you don't. Spare both of yourselves -- leave him. Make arrangements for an assisted living facility for John. Let him have some peace as he works to shoulder this struggle to survive.

Recently, a person with LBD on the LBDA forums revealed that his wife had up and left and taken the children - she said she just couldn't handle what was coming. He'd been writing for a long time, and what I can tell you is that in the period after his wife left, he sounded more at peace and centered and ready to do his Lewy journey than he had for the many months previous.

If this is all just temporarily too much, you love the man, but you're overwhelmed and pissed and scared and just need a beat to regain your equilibrium, find that time and space for yourself to get away from it all while John can still spend a few days without you.

Find your peace, decide that life is too short, that this man is too special, and that Lewy is a punk who will not rob you two of your love, dignity, and the time you have together as a marriage and as a family.

Decide to be patient,loving, selfless, kind, encouraging and right there beside him emotionally as his self slips away.

You don't need couples counseling as much as you each need support and counseling for the very different fears and futures you are dealing with apart from the other.

Your job and your house renovation plans are each a stressor on their own. Piled together and on top of Lewy, you will not be able to do it all. You'll kill yourself trying. Decide what is most important and chop the rest away.

I tell people all the time that I can be a powerful and effective professional; I can be Jerome's angel, guide, protector, playpal, and advocate; I can run a wonderful and warm (and clean!) home.

I just can't be all three to the best of my ability at the same time.

I can do any two of those really well. But I FINALLY admitted that I can't do all three at the same time. Neither can you ... and your load is so much larger -- you're a mom!!

Something had to give. My house is filthy -- dust and dirt an inch thick -- an embarrassment. I've resorted to lots of microwave meals for us (yuch) and the dogs have not had a bath in a year. Guess which two I picked.

Something of you three will have to give or you'll end up worn out AND disgusted with the half-assed job you've done with each.

So, I'm begging you, Pam -- before you completely lose it -- to pick the two of the three that are most important to you, and drop the third.

No matter which two you pick, I guarantee it will be the right and best decision for you AND for John.

The real challenge is being deeply honest with yourself. None of us want to be on this ride -- it's a matter of choice, however, about how you will deal with it.

My best thoughts and admiration go out to you...

Renata Rafferty

Pauline said...


Renata, you said so many things that are so true. I felt so like Daddy was being "difficult"...but it was my impatience and not admitting that Daddy "could not" any more.

With LBD you cannot be more correct; You must make the most of every minute that the LBD patient is not off in Lewyland. Those moments become so scarce so fast.

With Daddy he was in mid stage 6 one day and in mid stage 7 the next day. What had been irritating to me suddenly became precious moments.

Daddy did not want to die. He was afraid and said so as long as he was still able to speak. He never seemed to grasp that the end was near; he was going to beat it...

LBD is so cruel. You said it all. I wish I had you (out)there when I was taking care of my Dad.

Back then I was feeling pretty sorry for myself, gave up my professional life, was chained to the house...I know how Pam feels. It's not a good place.

Now that Daddy is gone, my only regret is that I was petty and selfish; for all the times it was about me, not about him.

Joann said...

I believe that the creativity and self determination you have will take you down a path that is uniquely yours and John's. I have faith that planning, preparing and being the best you can be, will be adequate.

Sometimes adequacy is more important than excelling. Some "tests" are simply pass/fail. In this one, being good, kind, consistent, and supportive over the long haul is more important than trying to be the superhero caregiver. Sometimes striving for adequacy is just right. Each caregiver and each cared for person finds their own "dance" that works for them.

More than anything be kind to both yourself and John. Both of you have big adjustments to make. The balm of kindness makes up for lots of shortcomings or lack of enthusiasm. Kindness is a grace we too often take for granted.

Equality works when those who come to the table have equal treasure/gifts/talent. There is nothing in Feminism that doesn't allow for kindness/gifts/compassion. At least not in my mind.

Life is one big learning experience and many of the lessons are not ones we might have selected if given the chance. I do believe that as you and John walk this journey, you will find the answers and coping skills that work for the two of you. No one else knows what those are. Blessings on you both as you walk this path.

valeria said...

I'm new to blogs, so please excuse me if I'm out of line. The lbda web site has been a lifesaver for me, a caretaker spouse to PE, 8 years down the Lewy line. I just would like to tell Pam that I am thinking of her (and of course all Lewy caretakers). Renata really knows how to express what everyone is going through, so I can only agree with her comments. The only thing is that I am 73 and the stress is so wearing on the system. Yes, I feel all of those things she mentioned-overtired, under appreciated, etc. I do everything too because the kind of help I need (on the spot 24 hours so I could leave for a weekend) doesn't exist here where I live-France.

So, yes, get help before you are worn out. Sleep is the best thing plus telling yourself that a lot of the things you think important can be put on the back burner. It has taken me a very long time not to mind cleaning up messes!
We'll be thinking of you. Dinny Wolff

Pam said...

Thank you, Valeria. I delete comments that link to advertisements, but otherwise I try to keep the comments open for people to express their own feelings, so you are very welcome to post comments here. I do think the usual support group rule to talk about your own experience, don't give advice, is a good approach to blog comments too.

It is hard for me because I am young, it is hard for you because your are not as young as you used to be. It is just hard. I hope we can find ways to at least feel not so alone.