Tuesday, July 19, 2011

Respite Care Widow


Flip is in a respite care center for three days. I told him he was going to camp, and that the nice people there would get to know him and try to help us through his disease. He seemed positive about going, which surprised me, but by the time I left an hour and a half later, he had noticed the decrepit old people hovering like crows in their bathrobes and said something in my ear which I'm sure meant "WTF?!" but was unintelligible, like everything he says these days. He had been set up at a table with a 26-piece jigsaw puzzle of the New York City skyline at night. He is by far the youngest person there.

I told the program director that if he seemed miserable and really wanted to come home, I would pick him up early. I know that I badly need a break from constant caregiving with almost no sleep, but leaving him didn't feel nearly as good as I thought it would. It feels like a betrayal just when his own body is abandoning him. It reminds me of having to take beloved but incurably ill animals to the vet to be put down. And yet, the prospect of three nights of uninterrupted sleep and a spotless bathroom is alluring. As he has rapidly lost the capacity to do most things for himself, I have had to take over and do them for him.

I know that if our situations were reversed, Flip would do the same for me. In our wedding ceremony, we vowed to always put our relationship before our individual wills, and I believe we nearly always have. It's painful to realize that for the most part, Flip has left the building. It is time for him to be in a facility where he can get 24-hour care from people more skilled than I who work in shifts so one person doesn't have to do it all. I have almost forgotten how easy it is to bathe, feed and dress only myself.

He is on a locked floor with an elevator which only operates when the code is keyed in by employees because he is a flight risk. I called the reception desk on his floor at 8:00 pm to see how he was doing. A woman named Freweyi called him to the phone. As soon as he heard my voice, he began to spout rapid Martian and got so worked up that she took the phone away from him. Whatever he said, I know it was code for "COME AND GET ME. NOW." I may not understand what he says, but his intent is usually clear. I know he'll survive the experience, but I would get more out of my three free days if it were not at his expense.

Alzheimer's is the gift that keeps on giving.

42 comments:

lgsquirrel said...

You are doing great by Flip. It is no easy task being the primary care giver. It drains physically and even more emotionally. Taking a few days to recharge is good for both you and Flip. I hope you will get the best of this brief respite. Hugs.

Taradharma said...

It's just a sad, bad situation all the way around. You are doing what you need to do to survive another day. Flip is being cared for, and that's important. And YOU are taking care of yourself, which is also important.

It just sucks all the way around.

Cheers.

Muhammad Israr said...

caregiving should be the most difficult task in the world..you are doing a great job by taking care of Flip... wish you all the best to both of you.. :)

TechnoBabe said...

It is just too much for you to be the only caregiver. There just has to be a way for other people to share the work and the load. How can you do all that is needed to care for Flip when you are constantly worn to a frazzle? I hope you get rest and lots of sleep and bath time for yourself and are able to do all that without the baggage of guilt. Hugs to you.

the walking man said...

Susan I have read how other bloggers have dealt with this situation and to perfectly honest, even though like you, I have never met them face to face I began to hate their attitude and even reading what they wrote. They were so full of the me me me, loss of myself.

You are opposite, you are losing your beloved husband and that is your love and as much as I had great respect for you before you have tripled it in how you are handling this awful ordeal with Flip.

Stay the course Kiddo, continue to pick 'em up and put 'em down and if you have to put Flip into a care facility it won't be for your peace of mind but for his safety and care. You will do all you can and then you will do what you must.

Love You.

Bob said...

Were Flip on an even keel, I know he'd be the first person to tell you to get some rest. No one person can be on duty 24 hours a day, 7 days a week. Your ability to care for him is based on you being able to get some rest.

I have so much respect for your selflessness and devotion to Flip. This short break isn't a betrayal of him or selfishness on your part. Take advantage of it and take up the reigns again recharged.

Take care.

nick said...

That is so sad. Sad for Flip being stuck somewhere without you and wondering where you've got to. But also sad for you trying to look after him 24/7 and naturally being worn to a frazzle when it's just the one of you and Flip is so demanding. You're absolutely right to want some respite care so you can have some semblance of a normal life and follow your own desires for a while. If anything, you should have a lot more respite care because full-time caring is an exhausting and draining business, however much you love the person.

Like the Walking Man, I admire your lack of egotistical complaint and your determination to make Flip's now limited life as comfortable and pleasant as it can be in the circumstances.

mischief said...

I know that you know, intellectually, that you are doing what needs to be done. And I know that in your heart it's completely different. I love your gentle sweet heart -- but listen to your head on this one.
*hug hug hug hug*

witnessing am i said...

Susan,

I know nothing about what is the right thing to do in situations like this, but I would have to say that what you are doing seems really right on:

1) getting help -- getting sleep, taking care of your sanity, taking Flip to camp when it is needed, etc

2) keeping in mind that "Flip would do the same" if situations were reversed. He would be embarrassed and horrified and very sorry about having to put you through what he has. He would understand all that you have done, no doubt.

You are a good woman, a terrific wife

Kim said...

I'm sorry. I don't know what else to say except, "I'm sorry."

neorachana said...

I work in a program that serves a lot of people with dementia. What you are doing by having him in respite is a very positive thing to do; necessary for you both so that you can keep him at home as long as possible. It is very difficult the first time, but essential for both of you. Take care of yourself and don't doubt your decision......

Kim said...

I'm sorry.

Jo said...

Susan, you are no good for Flip if you are exhausted. You need this rest. Desperately! I wish there were something more permanent for you so you can recharge your batteries on an ongoing basis.

Flip knows how much you love him, and you have cared for him with such grace, dignity and patience.

Enjoy your few days of rest!

English Rider said...

People who care for Alzheimers patients are Angels. You are one, as are those who go into work every day and treat their charges with dignity and affection.
Either way, Flip is with good people.

Molly said...

I hope you can catch up on some sleep and taking care of you while Flip is "at camp." What a lonely job you have, and how lucky he is that you love him so much.

Barb said...

To continue caring for Flip, you must also care for yourself. I applaud your honesty in describing your situation.

heartinsanfrancisco said...

Calvin,

Thank you. I am completely drained emotionally and physically.

Tara,

Yes, it does suck. It truly sucks.

Muhammad,

I appreciate your very kind thoughts.

Babe,

The baggage of guilt is very heavy. It's part of my conditioning, my heritage, and I am trying hard to overcome it because it serves no one well.

Mark,

Your last line should be my mantra: I will do all I can, and then I will do what I must.

Love you, too!

Bob,

You're right that Flip would not choose this for me if he were able to choose at all, just as I would never have chosen it for him. I am recharging here, now, with all my lovely and supportive blog friends.

Nick,

One of the hardest aspects of this is that it is increasingly hard to remember Flip as he used to be, and us as we used to be. I hope those memories come back because they are precious to me.

Lisa,

Don't you hate those junctures where head and heart are in disagreement? I am trying to do what is best for both of us and hate that I have all the decision-making power. It's not what either of us signed up for.

David,

If Flip were more aware, he'd be mortified at what is going on. It's really heartbreaking, and no course of action seems right.

Kim,

You're very kind. There isn't much else to say.

Neora,

Dementia is utterly heartbreaking, isn't it? Thank you for your knowledgeable advice. I noticed that you follow my blog - yippee and thank you so much.

Jo,

I feel as if I should be cramming a year's worth of accomplishment into these three days, but really all I want to do is rest.

ER,

I agree about the professional caregivers - they are truly angels. And best of all, there are more of them than there is of me.

Molly,

It's unbelievably lonely, but Flip deserves the best I can give.

Barb,

There have been times when I didn't think I could do it anymore, but since I must, I do. It's very difficult, though.

the only daughter said...

I simply cannot imagine. Here's to the rest yo shall keep toward building reserve for what else lies ahead.

English Rider said...

There comes a time when it is safer to have your loved one in professional care. Alzheimers can be so much more than memory loss. There are hallucinations, anxiety and personality changes.
My father had huge mood swings, he imagined people wanted to hurt him. It ended up being a blessing when he caught the house on fire, as social services stepped in to confirm what we knew, but he had managed to hide from his doctor, that he was not competent to live alone and now had no home to return to. He was admitted to a wonderful care facility and had meds to alleviate his worries. He was allowed as many bowls of ice cream as he wanted. He would eat some and forget he'd had it so ask for more. There was no point trying to control his diabetes. WTF for? My sister and I knew that there could be no positive end to the story, just an end. We had, of course, filled out an advanced directive regarding extreme life saving measures. What we learned too late and so I will share, directions need to be specific regarding withholding antibiotics for bronchitis etc. Pneumonia is a peaceful friend when it is time. All of this is hard to write and harder to live through. Know that you will reach a time when you will be less tormented and you will be able to dust off all the good memories and treasure them. It sounds as though you should consider letting Flip stay at camp permanently. Hugs and shared tears to you whatever you decide.

heartinsanfrancisco said...

OD,

If only it were possible to store sleep. Thank you for your kind wishes.

ER,

I'm sorry for your loss of the father you loved. Flip has tremendous anxiety, some paranoia, and probably hallucinations as he argues with unseen forces constantly, saying things like, "No, I won't." (Otherwise, he speaks jibberish.) I even said once at 4:00 am, "What do they want you to do?" He didn't respond. So yes, we've already had significant personality changes, and he is not safe at home alone.

Thank you for the specific advice on Advance Directives - I've got that covered, I think. As for keeping him there, I wish it were possible but we fall through cracks as we're not eligible for Medi-Cal (which is California's Medicaid) but can't afford to pay thousands of dollars/month privately. I'll have to think of something soon, though.

meno said...

You have nothing but my sympathy. Doing the right thing doesn't always feel good, but it is necessary. You HAVE to take care of yourself.

giftsofthejourney said...

My aunt has Alzheimer's and had to go into care after breaking her leg. She was just supposed to be there for a short while as she still flits in and out of lucidity.

Her daughter had been her primary caretaker and was worn to a frazzle. At first my aunt complained and wanted to come home until she met a man and fell in love and won't leave his side for long now. She is happier than anyone has seen her in the years since her husband died and even though she doesn't always remember her past, she is very attached to her present.

I know that is a not a help to you, but I hope you can let go of some of your guilt. You have nothing to feel guilty for. I think sometimes people with Alzheimer's improve a bit with outside stimulation.

My grandmother had it too. I sure hope it skips me. Please remember to take care of yourself. Flip would want that I'm sure.

secret agent woman said...

I have nothing of value to say except that I am sending my love.

heartinsanfrancisco said...

Meno,

I have thought for a long time that a good standard would be "What would Meno do?" Thank you.

Gifts,

It must be terribly sad and scary to have so much AD in your family. I hope it skips you, too. Your aunt's story sounds like the Julie Christie movie, "Away From Her," which was quite good. Thanks for your encouragement.

Agent,

What could be more valuable than that? Thank you!

RED MOJO said...

Susan, I know you're feeling guilty, but you are only human after all. You are doing the right thing! It's best for both of you... Don't beat yourself up, you've been such a rock! Keep up the good work. Love and hugs!

PeterAtLarge said...

This is heartbreaking. And thank you, also, for the reminder that as I grow older I must keep reminding my wife and family of my wish that, should I lose my mind and my ability to take care of myself, they do what you have so lovingly done for Flip. Please, for his sake, take care of yourself. With love...

Paige Jennifer said...

Thanks for sharing this. My father has been sick with a rare and incurable neurological. This past year, when a relative fell ill with dimentia, I turned to my sister and said, "At least with dad, you can see what's wrong with him." I'm so sorry for what you're going through.

heartinsanfrancisco said...

T,

Certain aspects of nursing tend to drive out guilt. I'm not sure I'm a rock, but it sure is rocky, and I don't think I have the energy to beat myself up anymore.

Peter,

I remind myself constantly that however dreadful this is for me, it's even worse for Flip as he is losing himself. I sincerely hope for your sake and Ellie's that you never develop any kind of dementia.

Paige,

It is a challenge unlike any other. I'm sorry that you're experiencing so much serious illness in your family,and hope they find a cure or at least some relief for your dad's illness. Thank you for your visit!

Maria said...

You cannot do this alone. Yet, taking help must feel like a copout. NEVER think it is, NEVER.

I vowed long ago to never meet anyone in Blogville...3 really miserable experiences led me down that road...but I swear if we were in the same place, I would be there with tea and sympathy and anything else you might need. Maybe a shot of hard liquor?

Shoulders here. Always ready.

heartinsanfrancisco said...

Maria,

I have often wished we were in the same place because I would love to know you, so thank you for your virtual tea and sympathy. It is much appreciated. (I actually looked for your email address on your profile page once - if you ever feel inclined, mine is available. And if not, it's perfectly fine - I've also had a couple of bad experiences with bloggers and understand.)

Tanya Brown said...

I haven't been around to visit in quite some time, and I'm sorry for that, although there are a good many people besides me who care and want things to go well for you.

I can only reiterate what others have said: what you're doing is wise and smart. Your Flip is being taken care of, and you'll be all the better for getting some rest. The person he was before all of this hell set in would not have wanted to put you through this, and would definitely wanted you to take a break.

Tor Hershman said...

Life - a horribe mess and best if avoided.

heartinsanfrancisco said...

Tanya,

It's great to see you again. I agree that Pre-Alzheimer's Flip would not have wanted this for me. He's been back for several days and it's as if the break never happened, but then, I knew it would be. Thanks for all your kind thoughts.

Tor,

You have a most interesting philosophy of life. Do you have any suggestions for implementing such avoidance? Thank you for your visit.

Solo said...

I so deeply understand what you're going through.
I am the sole caregiver for my older Brother who not only has Down's Syndrome, but Alzheimer's as well.
A weekend respite at the Center for the Mentally Retarded here in Houston runs $375.00 from Fri pm to Mon am. I simply cannot afford that.

Brother is a 225 lb.er and that makes it all the more difficult to bathe him and such. We do not qualify for state assistance because he can still brush his teeth, and I am not destitute. Because of the combination of these factors, it truly feels like an imprisonment for me.

If you ever need to vent, please feel free to let me know: magnoliabayfilms@yahoo.com.

I would be happy to help.

Hang in there. Our turn will come someday.

mrwriteon said...

It must be so difficult for you, Susan. I know it would be for me if I should ever have to face it.
But, you are doing what you need to do for you so that you can continue to be there for him.
So, enjoy the three day 'vacation', though I'm sure that is scant consolation. My thoughts and compassion go to you, as you know.

heartinsanfrancisco said...

Solo,

Your road is a very hard one as well. It's impossible to accept that in an era of obscenely huge taxpayer-funded corporate "bonuses," the fact that a person can still brush his teeth disqualifies him from public assistance.

I still believe that life seeks balance, and that at some point our lives will be exactly as rewarding as they are presently unrewarding, but I know that's a lot like putting my faith in lucky charms. I hope that things change for the better for you - I understand how you feel because I do, too. Thank you for your visit, and your email.

Ian,

It was nice while it lasted, and now it's over. I appreciate your thoughts and compassion.

Wanderlust Scarlett said...

Wishing you peace, dearest of Hearts, peace and rest, with enormous love.

Scarlett

Wanderlust Scarlett said...

I wish so much that I could do more for you than that. Something practical and useful. If anything comes up, I am a phone call away, an email, so close and so not nearly close enough.

:/

XOXO

heartinsanfrancisco said...

Scarlett,

I know all that is true, but thank you for the lovely reminder anyway. You have a really kind heart inside your most beautiful self.

Brown said...

I don't know much of anything...but I do agree with Jo and mischief. You're not serving anyone unless you're healthy and well rested.

I see a lot of people come through the center with the most debilitating of ailments and I'm sure I don't even get a glimpse of what you endure. I applaud you, your heart, and your spirit and I wish you the best during these times. Just wish I could give you a massage, as I'm sure you're well overdo.

heartinsanfrancisco said...

Brown,

I would give anything for a massage.I have lots of physical pain, and a permanent stiff neck which I'm sure is symbolic. Life is incredibly difficult right now, but I appreciate your very kind words and thoughts.

seventh sister said...

Any director who call the police when an Alzheimers patient throws a punch should not be in that position and is obviously incapable of handling the job.