Thursday, August 25, 2011

'Twas Brillig and the Slithy Toves

A very hard day today. Flip was fine when I fed him lunch and took him for a walk around the floor, but he awakened from a nap a totally different person, angry, aggressive, frustrated and not his sweet-tempered self at all. He was throwing punches at everyone, making fists, baring his teeth and hissing like a small child who is pretending to be a scary monster. Several people were in fact scared, and the woman who was scheduled to be his evening sitter refused because she said he spat at her. (I think he must have hissed and perhaps some saliva escaped, but I didn't see it.) Security was called (again.) He remembered the words "Fuck you!" and hurled them at everyone. I think he has reached the end of his endurance for the hospital, which is like prison in his case as everyone is pushing and pulling him and controlling everything he does. Another dimension to his pain derives from being relatively young and used to exercising his body. In his mind, I think, he is fighting for his life, Flip against the world. He even yanked my arm off his, even though I had just helped him in the bathroom by aiming his penis (inexpertly) at the toilet. His life has lost much of its dignity.

He has been accepted to a facility in San Francisco, but it will take more than a month before his name comes up on the waiting list. The hospital is discharging him tomorrow, and unless another place in San Francisco comes through at the last minute, he will have to go to one of two nursing homes in Oakland, which is even farther away in the East Bay than Berkeley. The better of the two is in a dangerous slum, and I am not pleased that I'll be alone on the street there at all hours, going to and from wherever I find parking. I have fought hard against this but don't have a choice as he is considered medically stable, and Medicare won't pay hospital charges once a doctor has made that determination. This explains why the hospital in San Francisco booted him against his doctor's orders and without my consent. It's obscene that our health decisions are no longer made by medical people but by insurance adjusters and accountants.

There will be many days like today, and some better ones as well, randomly distributed. A youngish, strong man with an elderly person's disease is a lot like a Doberman Pinscher, a breed that was created by crossing the Rottweiler with the Black and Tan Terrier and German Pinscher. While I have known some lovely Dobermans, it is generally a recipe for disaster to combine an energetic, tenacious terrier with a much larger, aggressive animal. My point, admittedly far-fetched, is that Flip's youthfulness in combination with a mind that is rapidly losing its behavioral filters is someone who could become dangerous to himself and others. While I am not afraid of him, today made me aware that he has become unpredictable and cannot be relied upon to be the delightful, intelligent, extremely compassionate man he always was. I just called to see how he's doing tonight and was told there was another episode. It sounds as if he may have had some kind of psychotic break, but perhaps it's just his brain cells exploding like popcorn over a fire.

So tomorrow he moves again, ready or not. This disease is intellectually fascinating and utterly heartbreaking. I can honestly say that given a choice, I would have preferred to remain ignorant of this particular knowledge.


mischief said...

I wish you had remained ignorant of this type of knowledge too. I really do. I admire you so much for the way you are working through this and my brain keeps churning out good thoughts and attempts at magic spells to make things better. I hope something works. xx

Jo said...

Oh, Susan. Why is this happening!? Poor Flip, and poor you. You have been through so much lately, I hope you have someone you can talk to, because you're going to be breaking down soon too.

"It's obscene that our health decisions are no longer made by medical people but by insurance adjusters and accountants." I thought America was supposed to fix that...!

I wish you and Flip could come to Canada. We would take good care of you ~~ both!

secret agent woman said...

It is indeed obscene. Business people should not be making health care decisions. I can't imagine how disorienting this is for you both.

nick said...

Worrying that Flip seems to be having an increasing number of aggressive episodes. But it's hard to see how they can be prevented given they arise from his current mental state.

Crazy that you have to go such a long way to a temporary nursing home (in a dodgy neighbourhood) because there's nothing available locally. I hope the San Francisco place has a room for him soon.

And I also think it's absurd that medical decisions are made by insurance companies. Is this due to change under the new legislation Obama got through?

Bob said...

I'm so sorry. I can't imagine what it is like to look at your husband and see a stranger. what a cruel disease.

Anonymous said...

How you must feel like Alice every day. Lewis Carroll had nothing on this horrible disease.

I read your words and tears well up -- for I am so very sad for Flip, denied himself and denied loving Susan, who so wants that love. As you said, "In his mind, I think, he is fighting for his life, Flip against the world." How horrible a fate for such a loving man, such a horrible thing to witness and try to protect him from.

Hugs, dear Susan, many many hugs.

TechnoBabe said...

You have been diligent in your search, and it is a month from placing Flip in a safer environment, as well as you in a safer area to see him. I don't know what I would do in your position. You have an inner strength I don't think I have. I am thinking of you often.

the walking man said...

No one knows what his eyes see or his brain is perceiving through all of the sensory inputs and no one knows why the gentle person turns violent and aggressive when ALS turns off reality (our reality) and substitutes it for another. All that can be done is to try to find a way to condition Flip now to accept comfort which would calm him. Have you tried music, playing some of his favorite music?

And the 'hood in Oakland--don't worry Susan if they see you there a second time the hood rats will already know why you are there and will leave you be. They relate well to pain and hurt, You will be safe.

Wanderlust Scarlett said...

I can think of nothing to say to you, and if I was sitting next to you, I could only hug you with quiet strength and let you cry until you fell asleep, without a single word.


meno said...

What a devastating way to lose your husband,to see his mind going.

Nothing for me to say except that i'm sorry. Remember to take care of yourself.

Tanya Brown said...

I am sorry.

It sounds as though you've done an excellent job making arrangements for him in a bewildering, horrid situation.

English Rider said...

Shopping list of the future: pepper spray, steering wheel club/clamp, tranquilizers for two.
So now our fingers are crossed for you that the space in San Francisco will open up sooner than expected.

Taradharma said...

Oy vey, darling. Your assessments of Flip's circumstances are insightful...his body probably does need exercise! To carry forward the dog analogy, when he doesn't get his daily walks he becomes aggressive. Makes sense to me. And the places where he's at just don't have the staffing to make sure he gets what he needs in this area.

What's your go-to place for solace, my dear? Who is helping YOU? xxxooo

Leight said...

I am hoping that Flip does not remember his bad moments. And hoping that you do force yourself to breath, breath, breath through this intensely sad and strange experience.

Molly said...

Hugs and fingers crossed, and a pox on a system wherein the dollar is more valued than the human spirit.

heartinsanfrancisco said...


I feel better knowing that you are working on my case, so please keep churning. Thank you! xxx


As you know, Flip's mother was a Canadian who never became an American citizen, as far as I know. It's definitely challenging to fight for everything Flip needs and to try to consider my own needs, too.


It is utterly disorienting for me, too, because I have to learn to live without him. All the focus is on Flip, including mine, but I am struggling with enormous loss, too, and mine will probably last longer.


I don't think Obama can be blamed for the entire problem - America's health care system has been in trouble for a long time. But he is not helping either. I attribute Flip's unsociable behaviors, when they occur, partly to the medications they insist on giving him and partly to the changes which are part of his disease.


AD is like a nightmare from which it is impossible to awaken. All I can do is the best I can for Flip as his advocate, his friend, and his wife.


Your hugs are always welcome. I am trying to focus on the really happy relationship Flip and I had for over 20 years, and I think that even if I had known this would happen, I would still have married him.


You have proven yourself to be immensely strong, always. I think we are as strong as our lives require us to be, so if you are feeling less so now than before, it's because you are finally in a good and safe place and relationship, and I'm so happy for you.


I bought Flip a portable CD player and took him some of his own music as well as other artists. I don't think he's using it much, though.

He was very upset when I arrived today, but finally calmed down and I spent several hours just letting him know I love him. He is in torment and that is all I know how to do.

The neighborhood is just a barrio. Big deal. I'm sure it's full of hard working people raising their families, but so many people are terrified of the poor. I am far more terrified of those with no hearts.


Sleep would be nice. Please hold that thought. Thank you.


Sometimes I count all the ways in which he is losing his mind. He was so very bright and talented, quick witted, loving, generous, loyal and kind. I think everyone who ever knew Flip loved him, even my children, which says a lot.


It's been one obstacle after another, and we're still not "done" because I desperately need to get him back to San Francisco. I am giving every ounce of my energy to this and it will have to work out at some point. Effort brings results, right?


Where do you shop? My shopping lists are so mundane by comparison: cat food, paper towels, chocolate...I could definitely learn a thing or two from you.


Who is helping me? Why,YOU are, and everyone else here. I hesitated to write such dreary posts instead of funny, light-hearted ones, but I feel so supported now. Thank you all!


I don't know how much Flip remembers, but if they would stop giving him Ativan, he would stop being aggressive. They are looking for a quick fix and compounding the problem.


Yes, what have we become that people are disposable and it's all about the bottom line? My feelings exactly. Thank you for the hugs and please keep your fingers crossed.