Spaghetti with Raisins: Guiding Your Loved One with Dementia Toward the Safety of Long-Term Care

By Anne R. Curran

Your help is needed.

Stop by for tea and a chat if that is all you can do.

Stop by and let the caregiver go shopping by herself for an hour or two. Oh, how I loved that opportunity!

Stay overnight or a weekend and allow the caregiver a real break to wind down, get a massage or stay in a motel alone where she can sleep as late as she needs to next morning.

Families, plan together. Make a casserole dish to help your beloved mother or father so that they dont have to cook once or twice a week.

Invite your loved one and their caregiver to your home for lunch or supper for as long as they are able to visit.

If you are adept at paperwork, help the caregiver sort through the quagmire of forms they have to deal with.

Assist them in looking for long-term care so they dont have to take the whole burden on alone.

Sometimes it is only one daughter or son helping out. They need a break too. Extended family, be aware and help out where you can.

• Language: English
• Publisher: Archway Publishing
• Release date: Sep 10, 2018
• ISBN: 9781480865310

Anne R. Curran

Anne R. Curran earned a bachelor of arts in psychology and sociology from the University of Massachusetts Dartmouth. She spent more than forty years serving youth (in education, employment, and as a child investigator). She has also served adults and seniors as a social worker, geriatric care manager, and has worked in a variety of mental health capacities. Shes retired and enjoys spending time with her five children, eleven grandchildren, and eight great grandchildren.

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Copyright © 2018 Anne R. Curran.

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ISBN: 978-1-4808-6532-7 (sc)

ISBN: 978-1-4808-6531-0 (e)

Library of Congress Control Number: 2018950643

Archway Publishing rev. date: 08/20/2018

Contents

Preface

Acknowledgements

Introduction

Chapter 1

Chapter 2 Love and Loss

Chapter 3 Long Ago

Chapter 4 Courting Time

Chapter 5 Married Life

Chapter 6 Home with My Family

Chapter 7 Time for Myself

Chapter 8 A Welcome Guest

Chapter 9 Another Move

Chapter 10 Kip

Chapter 11 Our Last Home Together and Beloved Brother Bill

Chapter 12 Seeking Clarification Another Setback

Chapter 13 Seeking Support Services

Chapter 14 Wedding Bells and Family Update

Chapter 15 Safe Haven

Chapter 16 St. Peter’s

Epilogue

Author Note

Post Script

About the Book

About the Author

Dedication

To all my children,

especially to my son, Kenneth,

who we lost to an auto accident in 1988,

and who inspired me to write my first book.

Preface

Having been a social worker, I am quite familiar with the disease of dementia. I have worked as a social worker in an adult day health care center and witnessed it firsthand at most stages. I have known the clients, worked with their families, and assisted at support groups. It is a sad and confusing condition, even more so when it is exacerbated by other age-related illnesses as it was with my husband.

Working in a professional capacity with clients and their families is always challenging, but we most often see the clients when they are at their best—neatly dressed and somewhat aware of their surroundings, accompanied by a family member. The scene, however, is absent of the devastating and immeasurable loss that is truly occurring for everyone involved. As the caregiver of a loved one, I can tell you it feels like a rug is being pulled out from under you one small jolt at a time. The secure foundation that you worked so hard to build with your spouse is chipped away one incident, one day, one week, one month at a time until you no longer recognize the life you once shared.

At first, the loss is just an inconvenience. Your spouse loses his keys, or he has forgotten and missed appointments but as time passes, the deficiencies begin to mount up. You begin to recognize the losses for what they really mean. You lose your companion, your kindred spirit, the person with whom you made all your decisions. You not only have to pick up the slack for what they used to contribute but must also begin to plan for the future in ways you never envisioned: becoming a health care proxy, a durable power of attorney, and a strong advocate for your loved one. You must monitor your finances while trying to maintain your family and social life. You try to care for your spouse in every way; hygienically, nutritionally, and socially—until you find it is an impossible task to provide adequate care any longer and it may be time for the dreadful decision of placement in a long-term care facility. And therein can come so many difficulties. Is your spouse ready and agreeable to such a move? Are you? What facility do you choose? And on ‘ad infinitum’ the doubts and queries continue.

I have written this book because I strongly feel that the role of the caregiver is of prime importance, if not equal to the patient’s role. Caregivers tend to adapt to their new role incrementally just as dementia progresses incrementally. Dementia approaches surreptitiously, like a thief in the night robbing the afflicted of their ability to make rational decisions and challenging your partner in areas of expertise, never before considered. It is an overwhelming ‘on the job’ learning experience. You are in over your head in so many ways that it requires a blueprint to help you maneuver through the maze of decisions you will have to make. Thankfully, as time passes and the disease of dementia becomes better known, more people are acknowledging and dealing with all the problems it presents, and more options are becoming available to caregivers. Yet this will still remain an almost inhumane task, for caregiving is not just a physical investment and commitment but an emotional one as well. Your spouse’s disease may be rooted in his brain, but your malaise and loss is rooted in your heart.

Simply put, it requires support and compassion for both the patient and the caregiver. It needs to be better understood at every level. Unless a cure or a proven preventative measure is found, we will be in this quagmire for a very long time. Extended families should know the toll this condition takes on a caregiver.

Acknowledgements

I am forever grateful to Archway Publishing and their staff for assisting me in writing and completion of this book Spaghetti with Raisins which means so much to me.

I wanted my book to be as good as it could be, and being a novice at writing, I needed assurance that what I created would be of good quality, not just for my own sake but also for whomever chooses to pick up my book and read it. The rush to self-publish is accelerating and when I saw that Simon and Schuster had a self-publishing division, I thought that’s for me. Archway will provide me with the honesty, accuracy and quality I am seeking. And they have. I thank everyone, from my publishing consultant, William Curry, who provided me the motivation to ‘take it on’ to Scott Crenshaw, my Content Editor, who was saintly patient awaiting my progress during some rough patches, to Heather Perry, my Check-in-Coordinator, who diligently answered all my pesky questions and kept me on the right path to finally - the Editorial team who has polished my final product to what I now feel is worthy of presentation to the public.

Besides being proud of your work to your publishing company, you are now part of an endeavor to inform the community of important issues and hopefully, some resolutions to anyone involved within the long, slow road to dementia. Thank you all!

Yet not to forget my friend, Claire May who enthusiastically helped me set sail and my niece and namesake, Ruth Anne who lovingly guided my book into safe harbor.

Introduction

It was the summer of ’89 when a nurse colleague of Anne’s at the hospital where she worked in Vermont, introduced her to her Uncle Carmen, a most charming and affable fellow who recently lost his wife after a forty-two-year marriage. She had died in a fatal car accident when he was driving in New York, where they resided. Carmen suffered a head injury but was able to walk away from the accident. Gina, the nurse, was aware that Anne had also recently lost someone. In her case, her son Keith, age twenty-seven, had died in a car accident too and so with good will, Gina thought to bring them together.

So, Carmen and Anne were brought together in their grief in the hope of finding consolation and happiness in their futures. They eventually married, but their marriage was not as transparent as it should have been. Carmen had health problems he had not adequately addressed or disclosed to his new wife. He had presented his own family as close and functional when, in truth, there was much animosity amongst them all.

This was Anne’s third marriage, and she desperately wanted it to work; but she was dedicated to her five remaining adult children, some married with families who were sorely and sadly impacted by the loss of their brother Keith, who had brought so much joy to all their lives with his and his older brother’s music and comradery. They were all strongly bonded by this family gift, and now this link had been severed. Anne struggled with her marriage while attempting to develop healthy relationships with Carmen’s family and find balance and equanimity within her own.

These life issues were compounded when Anne, while working was also in a car accident resulting in a chronic condition now known and renamed as systemic exertional intolerance disease (SEID) previously known as chronic fatigue syndrome or CFS. Her ability to cope was challenged, and it took many years for Anne to get a proper diagnosis, while all the while she feels and is made to feel like a hypochondriac. Once properly diagnosed, however, all she could do was manage her symptoms and pace herself, so as not to overdo. That was easier said than done. For the most part, SEID is a hidden disease, unspoken of and kept behind closed doors, and its victims only venture out when they feel up to it. As well, it goes in and out of remission.

As the years moved on into the marriage, the couple discovered that Carmen’s head injury had resulted in brain damage to his frontal lobe. He began to lose his ability to plan anything sequentially, and he began to forget. His injury wasn’t recognized for what it truly was until more meaningful transactions took place in their lives when Anne began to put two and two together. What to do? But be patient, watchfully wait and continue observing. Daily life was what it was, however. Frustration and anger built up among them as Carmen’s prostate problem worsened over the years and became prostate cancer. He was also diagnosed with a problem heart requiring a triple bypass and a valve resection, and all the while, his dementia was getting worse. So too, he started interfering in Anne’s family matters, which should never have concerned him, making daily life overall, more difficult.

As Carmen’s conditions worsened, he began placing himself in unsafe predicaments requiring Anne to regrettably decide that he required long-term care placement. But Carmen tenaciously believed he did not belong in a nursing home and still articulate, vigorously rebelled, convincing the staff and just about everyone else that his wife was solely responsible for his incarceration. The next ten months became the worst and most intense time of their twenty-plus-year marriage, which made her decision to place him in long-term care almost unbearable.

Unfortunately, Anne received little to no support from Carmen’s family since both of his children lived out of state. Because Carmen was not father to Anne’s children, they also offered little relief or support; nothing of the kind their situation required. Will their marriage endure despite the stress? Will Carmen’s relationships with his children improve and provide him with some peace of mind in his advancing years? Or will he completely lose his mind first and never realize that loss?

Chapter 1

2011

Remember, you did this to me, my husband said blandly.

Oh God, please let us get through this, I prayed as I stood by the cold gurney outside the emergency room. I had no response adequate enough to comfort him or me. The dreaded time had arrived. I had promised myself that after one more fall, one more escape, I would have to readmit him to the nursing home. Just two days before, Peggy, my childhood friend, had said to me, What are you waiting for? For him to fall down the stairs and break his neck? Do you want to be caring for him in a wheelchair? It was no exaggeration. He had already fallen several times. Luckily, it was just the last few steps or into a snowbank where we could easily help him get up. I knew I was pushing my luck. It was past the time when he needed to be in a safe place. My nerves were steel and cold, and my heart was melting. I dared not open my mouth to say anything to him. If I did, the floodgates would open, and I would not be able to follow through with this inhumane task.

Of all days for him to be so lucid! Just yesterday morning he was brushing his teeth with Brylcreem despite the fact that I had put the toothpaste next to his toothbrush. We’d had a bad day. He balked at everything. He refused breakfast and wouldn’t allow me to help dress him. He had an undershirt, a T-shirt, and two plaid flannel shirts all tucked into his jeans. He insisted on turning the garden over by hand and hoe, although Jim, the gardener, and his rototiller would be coming shortly. Carmen loved his garden and working in the yard was one of his favorite things to do. I encouraged this and didn’t worry when he overspent on tools and materials that we might never use. In my mind, it was a small price to pay for his daily pleasure and diversion. My concern was that he didn’t know when to stop and would exhaust himself.

I was afraid for his heart. Not long ago, he’d had a triple bypass and a valve resection. But he also had an irregular heartbeat that concerned his physician. His heart was not strong. He persevered through lunchtime while I tried to get him to remove at least one shirt since perspiration was soaking through. He accepted water and sat down for a while. Fortunately, Jim arrived to turn over the rest of the garden.

Carmen ate half a sandwich but refused everything else. I brought his chair to the edge of the garden where he could watch, which was a big mistake because no one could do anything right in his opinion. He’d always had this trait, which now seemed exaggerated because of his dementia.

Look, he said while getting up and signaling for Jim to stop. You’re not doing this right. You’re supposed to be going in the same direction I was. Now you’ve got it all fucked up. Let me do it, he said as he attempted to take the machine out of Jim’s hands.

Jim, confused and not knowing his condition, looked at me for clarification while not surrendering his machine. A minor struggle took place. In the meantime, my son, Gregg, had been watching from the porch and came down to help out. He tried to reason with Carmen. This only exasperated Carmen more as he lamented, It’s none of your business. Go back where you belong.

I was able to calm Carmen down by distracting him and suggesting we walk, another favorite pastime of Carmen’s. I apologized to Jim as he continued to work. I had never before heard Carmen use the eff word. I said to him, Carmen, do you know what you said to that poor man?

Well, he doesn’t know what he’s doing. I had to show him.

Yeah, but you didn’t have to swear like that. You never swear.

Well, from now on, I’m swearing. Get used to it.

Later in the day, Gregg came upstairs from the apartment below. Standing at the top of the stairs, he asked Carmen if he could talk to me as he walked down the hallway toward my bedroom. Carmen became very upset, loudly ordering Gregg back downstairs and insinuating that he was trying to move in on him. You cannot see Irene. She’s resting. (Irene was his deceased wife’s name.) It was clear that he no longer remembered who Gregg was or his relationship to me and saw him now only as a jealous rival.

This sort of incident had happened a few times before, and it took us a while to figure out what might be going on in his mind. The scene became ugly because at that time Gregg did not totally understand Carmen’s condition. He’d only viewed anecdotal episodes of his behavior, and he felt hurt that this man he had once joked with and enjoyed was rebuffing him and keeping him from his mother. Carmen physically tried to keep Gregg from walking down the hall, blocking his way. Gregg’s patience was frayed, and he tried to push forward. I came out of my room to see Gregg and try to calm Carmen down.

Carmen, Gregg is my son. What are you doing? He’s my son.

I don’t care. I don’t want him here.

Carmen was red-faced with anger, and Gregg was flushed with humiliation. I discreetly told Gregg I would be down to talk as soon as I got Carmen settled in. As he left, I said to Carmen, Help me make us a cup of tea and stop being such a grouch. Being somewhat mollified, he went to the kitchen and sat down while I made us some tea. My stomach was in my throat, and my insides were shaking. Since I was a child, I never had the stomach for any kind of angry discourse or confrontation. It unraveled me. We were all at the end of our rope, caught up in the