Imagine that. It's been two weeks since the posting of the last musing. I wonder if we care-givers have lost the art of musing. Or the desire. You'd think that care-givers would find reason to muse daily. It's a nice way to get through troubled times. If nobody else is gonna muse, maybe I'll take over this section of the message boards. And I'll begin to show people how to muse on a daily basis. Where are you, fellow musers? --Jim

Hello Fellow Muser
Maybe caregivers get so caught up with the day-to-day grind that they don't give themselves the time to reflect on the lives and the issues of their loved one or themselves.
I have always found great solice in writing, particularly since we (my mom and I) had begun this long journey.
My thought today: How conflicted we are: that we fear the loss of our loved one, but how we chafe with the burden and the restrictions we endure. In any case, Muse away. I enjoy reading the poetry and I love writing my own.
Susan

Hello Jim,

I just found this message board today, which led me to your blog! I haven't gotten far into yet but what I have read, I have enjoyed! Let me share with you my blog as well: http://sleepjunky.blogspot.com

I write to remember the good stuff.

Fellow Blogger and Caregiver,
Alex Brown.

Well, if more "musings" were posted here, rather than the "Caregivers Forum", there would be more.

MUSINGS: On the road for five years:

When I first took on the care and feeding of my mom (AD) and stepfather (vaD), I was white-water rafting without a raft. I kept getting cut, and nearly drowning. I would land on a rock, hold on for dear life, catch by breath, and plunge right back in.

Mom, when she could talk, would repeat herself, and talk about her hallucinations without distress: parrots in the bushes, a woman on the roof of the house across the way, spiders on the floor. She would go through ten handbags looking for the money she hid which she never found. (I'm still looking for it. Waiting for a windfall.) She would try on every house coat in the closet. She even tried to cut roses in the front yard and cut herself, bleeding profusely. She looked so surprised that she got hurt.

Then it was the teaching her to use diapers. She'd wear them inside-out because, as a former seamstress, she "knew" the seams go on the inside. However, the absorbent part would be on the outside so it was useless.

She would allow us to bathe her in the tub in a chair, after battling us unenthusiastically, and then would not want to come out.

Now she just sits and sit. Does not play with her clothes or her pocket books. She does not allow us to bathe her without a World Wrestling Federation battle. She does not go outside unless we force her to walk for 10 minutes on a beautiful day. No more hallucinations. No more talking. No more following me around. No more calling me BY NAME when she needed me to wipe her behind or when she needed anything.

There was a time when my stepfather used to go out to buy the newspaper, and talk to his acquaintances in the neighborhood. He was so "friendly", neighbors called him The Mayor of Clason Point" where we live. He would go to get a hair cut frequently, would go to buy his Efferdent, and to refill his Metrocard. He would take mom outside and they'd sit on the benches out there, taking in the sun, greeting passersby.

Now they sit and watch t.v. all day, from dawn 'til dusk. They eat at their recliners. He goes once a month or every six weeks to get his hair cut. He doesn't buy the newspaper. (Recently he bought cigars--he doesn't smoke. But that passed.) He cashes his social security checks alone. (I'm afraid he is going to get mugged one of these days. Refuses, absolutely refuses to allow he home attendant to go with him. It makes him feel like an invalid.

There was always a surprise and a mini-emergency, and sometimes not so mini, like when he needed triple by-pass surgery two years ago, like when he needed a toe cut off, like when his potassium went so high I had to rush him to the ER. Now if it is high, I will not know and something bad will happen and I just sit and wait for it to come.

Palliative care is involved so I can call them if and when something goes really wrong.

I have learned incredible patience. I have observed the secret intimacy of my parents, when they don't know I'm looking; I have learned a spoon is better than a fork; how to lie beautifully; that there is a reason I never had children; that THEY are my children; that having cared for a multiply-handicapped niece was a training camp for dealing with my parents; caring doesn't require love and loving doesn't mean you care; absolute strangers are my closest allies.

I now have a raft in the white water. I have learned how to steer clear of rocks, and how not to go against the flow. I have learned how to appreciate the scenery which goes by sooo fast. Now I need to learn how to steer towards the shore for some desperately-needed respite.

Saribet, I don't know if you are still reading the musings. I want to thank you for sharing so much of yourself and your passage through this maze.
I am only 6 1/2 years "in" with my 89 yr. old father. As a cousin says, the barber doesn't know Dad has Alz., but anyone who cares to say more than how are you, that darn gas just keeps going up, or I'll be so glad when this election is over so the ads are gone from TV... will see he doesn't hold a very complicated conversation. The people who say one of the first signs of Alz. is the person doesn't know what his keys are for are so far off. Mis-information and denial keep many people from getting help as soon as they could. What's new about that, though.
I've learned that I have both more and less patience than I thought. That he probably has more problems than even I see and I live with him now. I'm so glad I moved back to this state several years ago because I can appreciate him more as a person than if I came back after the changes became obvious.
I hope that I can be the kind of caregiver that you have been to your parents. I'm the only one he has, so far.

Val-Re: Thank you for your reply to my musings. You are six and a half years with your dad? I've only been with my mom and stepfather for five! You're already ahead of me. Or does it count as ten because I've got two of them. (Just kiddin'.) A race we'd rather not be in.

About having coherent conversations where I say something, you reply to what I say, then share something of yours, I reply to what you say--conversational tennis is how I see it--many, many people are not very good at it. I work in a college, helping students improve their writing, helping them write all sorts of essays, narratives, comparison/contrasts, you get the picture. I repeatedly have to explain to them that writing IS conversation, and that the audience must always be taken into account. For most of them, it is a difficult concept to take in.

So if someone says to your father, "How 'bout them Yankees?" and he replies, "I don't wear a watch," the person will not think, "Hmmm, there is something wrong here." It takes a lot for people to notice. It's actually quite alarming to me. Means many families are not noticing what they need to notice in order to apply appropriate intervention.

You are probably being an adequate caregiver, just as I am. I am driven, relentless, pushy, assertive, sometimes aggressive, and sometimes even whimpy and passive. And it is these qualities that force me to take care of them. I cannot help myself. Resistance is futile. I just help. But I worked hard taking advantage of City services to have my mom and stepdad cared for. In essence, I coordinate their care, and only when there are crises in the middle of the night do I play hands-on caregiver.

As I said in my previous post, having cared for a mentally and physically handicapped teenage girl, I learned so much about what is "good enough" for their care and what is "over the top" because of society's expectations. I prefer to do the former and disregard the latter. It makes the loved one feel understood and happy, and makes life just a tad easier for the caregiver.

Where do you live now, and where did you live before?

Nice communicating at length, rather than hit-and-run advice threads, sometimes.

Hoping to hear from you--and anyone else--soon.

Going with a friend for a day's visit to South Ferry and Battery Park, look at memorials, sit among the trees, look at old Lady Liberty, eat something of dubious origins. Typical New York City outing. The weather's perfect for it.

Write back when you're able.

Saribet, thank you for that beautiful posting. Your words paint a very vivid picture, one that I relate to. One funny thing, though, is where you mention that all they do now is sit in front of the TV from dawn til dusk. I thought to myself how many people I know without AD who do this! I'm guilty myself. It's become the "opiate of the people" for today. It's sad, so many of us are just wasting time, and then you realize you may not have too much time left. Hopefully we realize it before it's too late.

Enjoy your outting to Battery Park. It's a lovely day in NYC.

Saribet,
I just read A New Earth, so saying what "I am" feels different now. The old answer is: I am an MSW, a social worker, who studied aging in graduate school. Ironic that I had an undergrad field placement in a nursing home where many of the residents had dementia, also a placement in an Alz. Day Care. Then in grad school an internship with clients who were caregivers of persons with brain impairments that started after age 18; many had dementia.

On learning that I was moving back to my "home" state to be with my father, a former field instructor said it looked like I was preparing for taking care of my father all during college.

But Alz. is the Great Leveler. Education is one thing, and it is helpful and great. But the everyday is the reality. We all are emotionally involved with our family members, and people on the outside of our situations don't understand how the power of that emotional connection affects our interactions with our loved ones. How many emotions can a person experience at one time? Is it recorded in Ripley's?

Regardless of education, I'm still a daughter whose father is slowly showing more deficits and a caregiver with a family who says he's fine, just getting old. My father looks normal, no illness to most people, but if they were here at home they would be so surprised at how many "interesting" things happen everyday. He dresses himself, but may start to go out the door to go the restaurant down the street and be wearing dirty clothes and much dirtier shoes. So I catch him if I am home, and he complains, but changes. And the other people at the restaurant can eat and not gag.


I gave up my favorite job and being near my friends and adult children to be here with my dad. That doesn't make me a saint, which is how I was treated by those friends and children when I told them I was moving. That was sweet for a moment and uncomfortable for longer because I knew how reluctant I really was. I was just in a position to make a decision as to what I would regret most on my last day of life. I chose being here, and now there is there is the Alz.. And yesterday, I finally logged on to this site. So that is what CPR feels like!!!!!

I am so grateful for all the people who write in with questions or answers or situations. We don't have real conversations here at home anymore.

I hope I will learn things that will be of help to others, too. No expert here, just another caregiver on a road with a few more streetlamps lit now that I have found you all.

ShellyShell: You're right. Why do you think the term couch potato is so apt in America (and around the world, although they may be sitting on rugs instead of sofas).

I, too, watch a great deal of t.v., but I like to think I'm entertaining myself and educating myself. It's still the boob-tube, but I'd be insane without it. I read about three books a week (long train and bus rides to and from work) besides watching t.v.

I am judgmental. My parents watch shows I consider inferior. Mom can't choose. Her AD is far too advanced. And even if she could choose, she would defer to my stepfather like the dutiful wife she has always been. He watches gossipy talk shows about stepfathers wanting to marry their stepdaughters, women prostituting their children, men having three and four wives--you get the picture. Or ridiculous, '50s style comedy hours. Or World Wrestling Federation. Before he gets up, I put the t.v. on Animal Planet for mom, since she gets up first, and mom comes to life, oohing and aahing at the animals. I don't feel guilty about judging those shows. They're bad!

Thank goodness for cable!

Val-Re: I know what you mean about the difference between the "education" and the "reality". But although we can't be prepared for how it feels when it's one of our own, it really does help, somehow.

When I read some of the earlier posts I placed, or the early posts of newbies, I can see the desperation and ignorance (and I mean that in its literal sense, lack of knowledge) and the hopelessness permeating the questions and the pain. With a social work background, which you have, and with my having cared for my handicapped niece, it made a difference, I'm sure.

I did half an MSW (30 credits at NYU) then thought I must be crazy, and dropped out after my first placement with eight multiple-diagnoses clients, each with ten years or more of homelessness. I got too involved, "fought" or rather, challenged, the psychiatrist and my supervisor too much. Did not get in trouble for that; they thought I was perfect for the job. But I knew I'd be burned out by the time I got my certification.

It sounds so unhealthy, but I gave up my life to be with my mom and stepfather. When he was still functioning (well, relatively speaking), and had not had a series of heart attacks, and had not yet been diagnosed with vascular dementia, I had had intentions of moving out on my own. But his decline happened quite suddenly and I couldn't leave. I could not put them in a home. He still functions enough to be able to make those kinds of decisions, in other words, to resist, and he'd win with the authorities. But even if they needed to be placed, I could not do it.

Maybe when the day comes that I can no longer pick them up off the floor, or roll them over to change their diapers (they're not there yet), I will call in hospice.

Actually, the full truth is that I cannot place my mom. I can, and will, place my stepdad if and when it is necessary.

I can't believe where this thread took me.

I'm so sorry about your dad. And I am happy for him he has you to keep him "presentable".

We are all relunctant saints. It is much to painful to go into it willingly and cheerfully.

My best to you.

More some other time. Hope to hear more of your musings in days to come.

Peace.

Saribet,
Eight multiple dx clients? I'm so glad you chose the path you did. Knowing yourself is part of making the "right" choices. I have thought about counseling people with chronic illness, but it's only in thinking stage. I worked in hospice for 5 years. (B.A. in SW came at 43, MSW at 47.)

You asked about states. California > Ohio. I'd love to visit NYC someday. They describe it as so full of life, culture and ethnicity. Part of my self care is computer vacations.
Self care is so important. I lag in that area. It really is true that you hae to take care of yourself first if you are going to have what it takes to care for anyone else.
Saribet, two at 5 years is 12 altogether. 5 yr. X 2 people plus 2 as a merit bonus.

Val-Re and Saribet, I am in awe of you both. You are such wonderful caregivers, you put me to total shame. I hope you both are richly rewarded in this lifetime for all you do. I learn so much by reading from everyone. I am really greatful. And YES, Saribet, I would go Kwazy without TV! Especially comedies. Even re-runs. Anything that brings laughter is a blessing.

But tonight, I went out and sat by the river and watched fireflies and just enjoyed that so much. A few years ago, I would have enjoyed it, too, but it seems everything I do now is colored by a new perspective.

My father doesn't like going outside anymore. It scares him. So now, whenever I am doing something, I am so, so very greatful to have the ability to enjoy it. When I'm out grocery shopping, or just riding the subway, I am greatful for my ability to do it. I hope I am never in a place where I am afraid of the sunset, or the outside, of people and chatter. But if I ever am, I am absolutely resolute in enjoying what I am capable of enjoying right now.

And I hope you had an amazing day today, and that you enjoyed the great outdoors, even if it was for a little while.

Hey Shell, you're as awesome as the next gal. Remember that things "read" nicer than what they are.

Self-Care: Great subject, Val-Re. Shell, your sitting by the river is your self-care. Val, your virtual vacations are yours. Mine? Hanging with friends, if and when they are available, and of course, the reading, the t.v. watching. Sitcom favorite: As Time Goes By, the British one with Judi Dench.

Well, went to Ground Zero area and saw the Irish Hunger Memorial. "Stole" a tiny plant with whitish-pink blossoms that had fallen out of a rock wall, planted it in the same pot as my rosemary. Cute.

Although the memorial is very pretty, sometimes even beautiful, it is like placing a precious brooch on an elaborate brocade dress with lace and frills. It can't be seen. I mean, there is just too much going on, too much activity around Ground Zero, too many people, too many buildings, other gardens, too much noise, just too much of everything to hear the recordings in the memorial, and to commune and give due respect to the dead.

Today, going to visit my friend on Staten Island. Ferry ride one of my favorite NYC things to do.

Shell, my mother loves to go out to the garden but needs to be taken. Unfortunately, she is psychically tethered to my stepfather, so it's hard to get her there in the first place, and harder still to keep her there. So it's the recliner next to him for her. My stepfather does not and has never known how to appreciate anything except booze, food, dominoes, and women. Now, he has nothing. Poor fellow.

Shell, I, too, have to remind myself that ANYTHING I do is a life blessing, taking the laundry to be done, buying toiletries, riding the bus and train to work. Inhaling. Exhaling. Especially the last two, since, unfortunately, just last month I was diagnosed (ugh!) with emphysema. Sad, isn't it?

Oops! Stepdad awake. Need to change his wound dressing and administer insulin. Those are my tasks. Maria, the home attendant, has the dubious distinction of helping him get dressed, and washing his dentures. And being with him ALL day. I'd jump off a cliff!

More later.

ShellyShell12,
A caregiver who "shows up' is awesome. A caregiver who "stays" in whatever capacity they are able is awesome. Shelly, I honor you as a caregiver. I'm only a stranger on-line, but I know that you have dealt with many things that others cannot, will not, or for whatever reason are afraid to. I have a long, long way to go in this ALZ journey with my dad, but I am stronger today because of you and the other people who take the time to add to these message boards. Thank you, fellow traveller. And to all the other white water rafters, thank you.

White water rafting sounds kinda nice on a day like today, actually! VERY HOT here!

Thank you again for the support, ladies. I'm very lucky in that we found a good place for my father, and everyone there loves him, and he's happy. Even though I'm not hands on every day, I get anxious sometimes because I'll worry about when the other 5 shoes will drop with his health, will I have to uproot and move him again, will the money hold out, etc.,etc.

Saribet, I'm so sorry to hear that you have emphysema. I hope that the condition can be held in check and not cause you too much grief. Be careful on these hot humid days.

Take care ladies and enjoy as much of the day as possible.

Love
Shelly

A musing...
I'm new to this site.. are these "things" called threads because the loved one is unraveling while the caregiver picks up the slack?

I don't know, but I'm up to my eyeballs in string, how 'bout you? he he!

xo