No rest for the respite

Though it's nice to have a change of pace from eldercare responsibilities, being home for four short days is no picnic. I've been in the garden pulling weeds each morning by 7:00. I had the air conditioners serviced, bought more paper products, cat litter, and cat food, and moved my winter clothes to storage. By the end of the day, I'm beat.

But in between those necessary tasks, I've lunched and dined with friends, talked with others by phone, and caught up, somewhat, with the joys and concerns of the neighborhood. Yes, it's wonderful to be home.

Today I had a much needed massage to work out the knots of tension in my head as well as my body. I feel like a new person.

I thank God for the opportunity to refresh and renew my energy for the challenges ahead.

Sue

Letting Go

I could have worried Dad to death with instructions and details before I left him at the skilled nursing center yesterday. "Now, if you're going to need help in the bathroom, ring the call bell before you go in there and get undressed..." But, knowing that he is easily confused and worried, I left most of those details for him and the nursing staff to figure out themselves. I'm sure there will be some tense moments.

So, I'm at the airport. They are loading the plane. I reach for my cell phone to turn it off and discover I've had a call from the nursing center. Do I pretend I didn't see it and get on the plane (the "ignorance is bliss" choice)? Or, do I call and risk hearing "your father (or mother) has taken a fall...rushed to the ER...etc." (the "my trip is f****d..." choice)?

I called. It seems the nursing staff was confused because they forgot I gave them all of Dad's pills to send to the pharmacy to be bubble-wrapped so that they can dispense them. My voice, raised several octaves and decibles, scared even me, and I'm sure alarmed those around me and, God bless her, the head nurse on the other end of the phone line. All she needed was the reminder to find the pills. All was well. I boarded the plane, and in a few hours was reunited with good friends in Las Vegas, sitting poolside with a glass of wine.

However, this morning, I faced the same struggle - Do I call to see how Mom and Dad made out last night and try to troubleshoot any problems that might have occurred? Or do I let go and let God take care of his octogenarian children? For now, I'm choosing the latter.

Sue

Respite Planning - the Final Countdown

Two and a half more days until I fly like a bird away from my cage to nine days of the life I call “normal.” Normal, as in singing with my choir, seeing good friends, sleeping in my own bed sandwiched between two cats, and catching up on some gardening.

I told Mom today about the plan for me to take a break and for Dad to stay in the nursing center with her for a week. She took it very well, expressed no concerns or anxiety. Man, those must be great meds they’re giving her!

I also signed all the paperwork for Dad’s stay and found out that he will get the room right next to Mom’s. I sure hope this works out and that they don’t drive each other and everyone else crazy. I typed up a three-page list of “tips” for the nursing staff about what aspects of daily living Dad can do for himself and what things he needs/expects assistance with. The Director of Nursing was most impressed – “I’ve never had any family member give us such a thoughtful and thorough description of a patient’s needs,” she said.

I’ve always been detail oriented. Strategies, plans, logistics are my forte. OK, so I’m a control freak. One of the things that scares me to death is the way an illness, such as Parkinsons, can take a strength and twist it into a obsession that no longer helps, but hampers, one’s ability to function in a way others would consider normal and reasonable.

Take my father, for example. He prides himself on his ability to keep himself clean and looking nice. Nothing wrong with that. But the Parkinsons Disease has turned the fairly simple activity of showering into a 90-minute loop of soaping, rinsing, re-soaping, re-rinsing, while the caregiver stands guard to catch him or pick him up if he falls.

Now, what will my obsession with planning look like in 25 years? Lists, long lists of meaningless things that I think I must do but can no longer do. Note to caregiver: Just give me a flipchart and some markers and let me make my lists.

Sue

No Fireworks

This morning after breakfast I finally found the courage and the words to talk to Dad about plans for my respite trip, which starts next Friday. I had run through all the worst-case scenarios in my mind – Dad curses at me; Dad becomes silent, hostile, and depressed; Dad flat out refuses to budge from his apartment. As usual, my fears were unfounded and a total waste of emotional energy.

Well, maybe not a total waste. It’s always useful to prepare for the worst and hope for the best. Though I had even considered waiting until the very last minute to reveal the plans, I just couldn’t treat him the way I know I would not want to be treated myself. Give him some time to get used to the idea; give him time to ask questions and feel secure that he will have all the support he needs, my conscience told me.

With a Parkinsons patient suffering from dementia, you don’t know what to expect, and you can’t necessarily expect them to think or act logically. This is something I rediscover almost every day. Though I had talked about my trip many times, I was surprised that Dad had completely forgotten about it. But I did anticipate that he would respond better to a visual plan. So I got out a month-at-a-glance calendar and made notes on the days I would be gone, the days he would spend at the nursing facility with Mom, the days he would have assistance from the home health aid, the day Sis will pick him up to spend time at her place, and the day I will return. He stared at the calendar for about 45 minutes, sometimes dozing off. Each time I asked if he had any questions, he would return to the first marked day and read the notes aloud, then he’d stare and doze some more.

Now, my challenge is to tell Mom about my trip. I worry that when she learns Dad will be staying “with” her (down the hall), she’ll think she’ll have to take care of him and will worry that she can’t. I worry that she will become further depressed and will fear I’m abandoning her. I’ll wait to tell her when Sis is here with me. Her presence will reinforce the fact that Sis will be available to visit and to help as needed.

I hope that I can keep Mom’s and Dad’s concerns, if they have any, on a higher level rather than in the nitty-gritty details. My job is to make sure the nursing facility has Dad’s medications, knows his daily habits and needs, and is prepared to make his stay a positive experience. He may end up there long-term eventually. I pray he may even look forward to it.

Sue

The Croc's Clock

Most nights I am reminded about 4 a.m. of Captain Hook’s dreaded tick-tock warning of the approaching crocodile. In my case, it’s the loudest clock ever invented, which happens to reside on the bedside table not far from my pillow. Such a loud TICK-TOCK for such a tiny portable clock.

During the day I don’t notice it; thus, I never remember to move the clock before I go to bed. But after something else awakens me – my bladder, a cough from my father, or whatever – the tick-tock is there to make further sleep nearly impossible. The sound promotes thinking; not the productive, creative sort of thinking I might enjoy even at 4 a.m., but the more worrisome kind of thinking – how will I announce my little vacation to Mom, and how will I tell Dad he’s going to spend his little vacation (from me) in skilled nursing with Mom?

Some nights I pray about whatever is on my mind. Other nights I pray that God will simply put me back to sleep quickly; never mind solving the problems.

These unresolved issues are like crocodiles chasing me through the swamp of my fear, indecision, insecurity. How much better I would sleep if I put troubling issues to bed early and the clock on the other side of the room.

Sue

Respite Planning

The respite I’ve been planning for these past couple of months is finally getting close. I’m taking about 10 days off to sing in a concert, weed my flowers at home, get my teeth cleaned, snuggle with my kitties (if they’re still speaking to me), visit with friends, and attend a regional art show. Sis and her partner agreed to watch over Mom and Dad while I’m gone.

Now comes the hard part – telling Mom and Dad. Dad already knows, but has probably forgotten. I’ve certainly talked about it openly in front of him many times. But here’s what he doesn’t know: I’ve arranged for him to spend part of the time in the skilled nursing facility with Mom. He gets 90 complimentary days as part of his living arrangements in this continuous care community where they reside. He’ll be well cared for and can help watch over Mom. I’ll continue his home health aid for three days that week; she can take him back to the apartment, to pick up the mail, or anywhere else he wants/needs to go. Sounds like a sweet deal to me.

But will he buy it? First, I anticipate he will feel he’s being stuck away with old, sick people because we think he’s old and sick. This week when I suggested we might have dinner in the assisting living dining room instead of the “independent” dining room where he normally eats, he seemed to get angry. Though he never actually completed the question, I think he was trying to ask me if anyone had complained about him eating there. Yet, I think/hope he will feel comfortable in the assisted living area because this is where he and Mom will belong pretty soon.

Second, I anticipate he will be confused and concerned about what exactly will happen while I’m gone. I’ve learned that he likes calendars and lists. So today I will buy him a large format calendar on which I can list in some detail what will happen each day. He can post it, along with my phone number. Also, Sis and her partner will come over after work during the week to visit both Mom and Dad and, on the weekend, they’ll take Dad out to their place.

When I return, I’ll be able to meet with the assisted living team to discuss their assessment of Dad and what level of care they feel he would need if/when Mom and Dad move in there.

I’m a bit less worried about Mom’s reaction to this plan. She may be apprehensive at first. But she receives so much support from the nursing staff that I think she won’t miss me too much.

The logistics are falling into place. If the emotional pieces of the puzzle come together in the next few days, I’ll be very happy.

Sue

Why this, Lord?

Imagine for a moment that all the skills for which you have been most respected throughout all of your career are suddenly gone. Imagine that you were an effective and persuasive speaker and you can no longer put a coherent sentence together. Imagine that you had a commanding voice, and you can no longer speak above a whisper. Imagine that you were blessed with logical thinking and analytical ability, but you now struggle to understand the sentiment behind a Mother’s Day card.

Why would God let this happen to someone? Why, of all things, would it afflict my father, who had a successful and respected career as a labor relations executive? He survived lung cancer for this? He drove a car until he was 82 and never had an accident – for this?

I used to have a recurring nightmare with only minor variations. The bad guys were after me; they almost had me in their clutches; and no sound would come out of my mouth. I wanted to scream, or, in some variations, I wanted to try to reason with them, but fear had stolen my voice. A “high intuitive” person once told me that this dream was about losing a most highly developed and valued ability.

I wonder if my father ever had dreams like that. I wonder if I, too, will be stripped of my ability to think creatively, to reason, to speak. I know my body will deteriorate, but please, God, let my mind and my voice be the last things to go.

Sue

PS - I won't keep you in suspense...yes, Dad signed the Mother's Day card...after two more hours of study and struggle.

Mother's Day

My husband has always insisted that Mother’s or Father’s Day and Valentines Day were simply creations of the greeting card industry and therefore meaningless. The sentiments expressed to loved ones could and should be expressed on any, or every, other day of the year. I don’t disagree. You can forget me on Mother’s Day, but don’t you dare forget my birthday!

However, of all the Mother’s Days I’ve experienced, this one will probably be among the most memorable because my mother is alive to celebrate it. Her trip to hell and back these last couple of months is not over; she still faces radiation treatments for her cancer. But this is a very pleasant rest stop along the highway and we’re going to make the most of it.

Mom is in the skilled nursing facility in the next building from where Dad and I are living. When Sis and her partner come over later today, we’re going to kidnap Mom and bring her over here for ham, potato salad, asparagus, brownies, and ice cream (all pureed for Mom because she can’t chew yet). We’ll even let her have a little glass of wine.

This is her day. Queen for the Day. The royal treatment will include a manicure, flowers, cards, and a bottle of her favorite perfume.

Dad will want to play along. We got him a “to my wife” Mother’s Day card to sign for her. But after reading it over and over again for more than an hour last night, he still wouldn’t sign it; it seems he didn’t understand the sentiment in the card. I thought it was perfect: I love you because you make me smile even where there are all kinds of reasons not to; I love you because you make me feel like I can do anything; I love you because you know me better than anyone, yet you still love me.

I couldn’t have written a better letter from him to my mother! I finally put the card away and told him he can read it again and sign it this morning. His Parkinsons causes him to "sundown" physically and mentally; anything requiring a signature (even a greeting card) should be presented early int he day.

Will Mom get a card from her husband on Mother’s Day? (insert a little suspenseful organ music) Stay tuned for the next episode.

Sue

As I am, Lord, wrinkles and all

This morning as I prepare to have my picture taken for our church directory, I stare into the mirror at all the extra “baggage” under my eyes. I may have aged 10 years in the two and a half months I’ve been caring for my parents.

Perhaps I just slept on my face wrong, I think hopefully. Or maybe it’s the humidity that causes my skin to puff and sag like a limp water balloon. Will it go away when I return to arid Utah? Or have the caring, crying, laughing, and vexations of these past months been written indelibly on my face?

Then I ponder the alternatives. I’m not the type to sit in a protective penthouse, high above the cares and needs of others. Nor am I the type to pull and stretch my aging skin, or inject it with toxins until I hardly recognize my image in the mirror. And I’d much rather collect facial baggage than hop aboard the next flight to eternity.

No, I’ll wear my new wrinkles with pride. With that said, I hope Olin Mills has a good airbrush.

Sue

Take one small dose of reality

Though Mother is still confused, she continues to get stronger and stronger every day. Thanks to an appetite stimulant, she is eating enough calories to negate the need for another feeding tube. And with a new antidepressant, we’re hopeful she will not worry so much about things real or imagined.

Wild animals attacked her one night. Last night she dropped the telephone and worried that she would not be able to get a new one for Dad. She imagines and worries that something is missing from her teeth – a key? A button? And although she has a catheter discretely removing waste from her body, she worries about the lack of privacy when she feels the urge to go.

Now here’s my dilemma: Now that she is about to be released from the rehab hospital to go to another skilled nursing facility, one step closer to home, I imagine she may be worried about not being able to do all the things she used to do – from household accounting to caring for Dad. I could tell her she’ll never have to (be able to) do those things again; Sis and I will handle everything, including eventually putting her and/or Dad into assisted living. But that might worry her even more – BIG CHANGE! So, I am trying to dispense one small dose of reality at a time, all the while cheerleading and reassuring. If she asks me a specific question about the future, I give her a truthful answer, but I don’t offer more than seems necessary. I hope I’m doing the right thing.

Sue

Hospital Psychosis

I’ve been worried about my mother’s apparent confusion and hallucinations since she’s been in the hospital. I’ve wondered if she would ever again have the cognitive ability, let alone physical strength, to live independently. Then, my sister-in-law told me about hospital psychosis.

Some people, particularly the elderly, are susceptible to this kind of confusion brought on by the unreality of being in a hospital setting. My sister-in-law reminded me that her father, while hospitalized, had been quite certain of a plot to poison him. Later, after he was home, he came to his senses, recalled what he had said (accusingly), and apologized.

Yesterday, on our visit to the hospital, we found Mom groaning and moaning, though when I asked if she was in pain, she said no. Meanwhile, her “roommate” on the other side of the blue curtain, was moaning even louder, complaining of stomach cramps and feeling sick. Shortly after we left, my sister arrived at the hospital to find Mom moaning loudly, crying, and complaining of stomach cramps.

Though Mom did, apparently, have a digestive disturbance (will spare the details), I must wonder whether these two women should be roommates. Are they feeding each other’s psychoses? Have they contracted the same virus or bacteria? Should we protect ourselves by staying away from the hospital and potential airborne pathogens?

Now, who’s psychotic?

Sue

Blue Heron

How exciting to be able to sit on your own sun porch and spot a Blue Heron at the edge of the pond below. As I watch the elegant bird stretch his neck, then dip his bill into the water, I think about all we miss in our middle years. From ages 6 to about 65, who has time to just sit and stare at a pond?

Even when we vacation, how easy it is to get caught up in a whirlwind of sightseeing, shopping, and other activities. Go, go, go is a choice we make without thinking about it most of the time. It feels awkward to stop, sit, stare at a pond. I feel guilty when I’m not tackling the next thing on my to-do list.

Though I don’t look forward to a loss of mobility (or my mind), there’s something to be said for aging in a place where you can stare at a pond and watch for the birds, ducks, turtles, and fish that perform for you all day long.

Sue

Sandwiched In

A lot has been said about Boomers sandwiched between childcare and eldercare. I was feeling fortunate, perhaps a little smug, that my childcare years are over and I can give full attention to the elders’ needs.

However, as some wise women have reminded me, “You’re always a mother.” Today, I’m feeling like a peanut butter and mashed banana sandwich (not very pretty, but hey, I’m in the South).

Though I know I’m doing the right thing to be here for my parents, especially for Mom’s unanticipated extended stay in the hospital, my heart aches to miss my youngest son’s graduation from college. The trip was planned for months, and I was just about to click on “purchase” to buy the plane tickets when Mom was diagnosed with cancer. I still held out hope that the eldercare situation would be under control and I could find a last-minute cheap seat to Paris, no less, but it ain’t going to happen.

I console myself (and my son) with the rational thought that there will be many more opportunities for us to do fun things together – even travel to Paris – and belated celebrations can be just as fun. My parents, on the other hand, could be gone within the year.

But I’m not feeling too rational right now. In fact, I’m having my own little pitty party, a soggy sandwich that tastes like tears.

Sue