Ten Years of Alzheimer’s Part II

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Because we were only casual friends at first, I didn’t notice the subtle changes that might have been appearing in Eve’s personality for quite some time. I believe her husband asked me to prepare the long-term care insurance policy because he knew she was going to need it. He knew what Alzheimer’s looked like because of their experience with his mother-in-law. She had lived with them for some time before Eve couldn’t handle it anymore.

Eve told me that she was grateful to a former sister-in-law who took her mother in and was paid to care for her until the end of her life. Some of the stories she told me about her mother helped me understand some of the changes that occurred with Eve, even though they were different. Her mother would ask her for money frequently even though she had no need for it or any way to spend it. After her passing, Eve found that her mother, who had been a professional seamstress, had made a false bottom to a kleenex box cover and hidden all her money there. I wonder if it gave her security? She told me her mother was a very sweet lady and easy to take care of, except that she would wander during the night into their bedroom and scare them. She would go through cabinets and drawers, taking things out and putting them back in without knowing what she was looking for. She, also, left the house without them knowing she was gone. Luckily, nothing tragic ever happened, but I think the constant attention that was required was more than Eve could bear.

Beyond her lack of trust for most people, especially men, which I assumed was the way she had always been, I didn’t recognize any unusual behavior in Eve until over a year after her husband passed. Around the time she arranged for the cruise with her friends, things started to disappear. She told me one day that two rings were missing. She was sure the cleaning lady had taken them. She didn’t want to accuse her outright, but told the woman they were missing and that her insurance company was going to investigate. She thought that would scare her into putting them back. It didn’t. Soon after that, she accused a friend of stealing her watch. She lost the friend in the process. I was observing the behavior and assuming that dementia was setting in. I was sure no one had stolen anything from her.

About six months after that, she decided that she wanted to sell her home that she and her husband had lived in for over thirty years. She wanted to take advantage of the insurance policy and move to assisted living so she didn’t have to take care of things anymore. During the packing process, we found her rings and her watch wrapped in cellophane and hidden far back in a deep basement closet that I wouldn’t have thought anyone had been in for years. She dismissed the incident and didn’t seem to regret having made accusations.

Because of her mental condition, eventually diagnosed as Alzheimer’s, she became very restless about everything. After a year in a lovely assisted living place, she suddenly didn’t like the people anymore and while my husband and I were away on a cruise one January, she found another place she liked better and made the commitment without me. Luckily, not much was done and I could take care of the legalities and logistics, which she couldn’t comprehend at all. She had been a Master Bridge player at one time, but couldn’t deal with details anymore.

Eve’s other friends were her age and had families, children to help them. I was the logical choice to take her to her doctors and make sure she was getting proper care. She had broken her leg and needed a surgery early on, and had a few physical problems that needed attention and oversight. Eventually, her ability to get around was better than her mental capacity. Within about five years of her husband’s death, she lost her driver’s license, couldn’t pass the driving test. Shortly after, a technician showed me the Cat Scan that made it clear there was brian disease.

We moved her three more times over the next several years, from one lovely place to another and back to the first, before the administrator of the facility asked me to come in for a meeting with the staff. Eve’s condition had progressed to a point where they could no longer be responsible for her care. She wasn’t sick, there was no reason for her to go to a hospital. But, she was a danger to herself and others. They had turned off the gas stove connection months before, but she was fighting with the staff constantly and refusing to take her medications. She would lash out and strike a staff person if she didn’t want to do what was needed, like drink water or shower. The accusations of stealing increased.

For some reason she never accused me of doing anything wrong. We had shared many years getting to know each other and enjoying each others company. I loved the stories of her life and the history behind her experience was fascinating. She grew up near the Alamo and Mexican border during the 1920’s and 30’s and remembered many things about the great depression. I have the address of her family home and plan to go there soon just to see what it looks now, since I finally have the time and have never been to the Alamo. The house her father built is still there. She had owned her own photography business, took pictures of babies, during WWII and a bit after. She said you could never take a bad picture of a baby, the parents would buy all you developed. I loved her and I think deep down she knew that and loved me, too.

The administrators of the assisted living facility recommended a dementia care home that just happened to be four minutes from my house. It was February, 2007, and my husband had been in intensive care with sepsis the previous September. He had never fully recovered. It would be a year before I sold my business, where I was only working part time now and mostly from home. So I was very happy to meet the lovely lady who owned the dementia care home. It was a perfect situation for the three of us.

Eve went downhill rapidly after the move. She was getting around pretty well at first, walking to the dining area and participating a little in an activity or two. She started losing her purse right away. She would call to tell me it had been stolen. It would be found in someone else’s room, but we didn’t tell her. After she passed I found pictures of other people and their families among her things. She had evidently left her purse in other residents rooms while looking at their family pictures. She started calling me in the middle of the night, I would say everything was fine, that I would see her tomorrow and she would hang up. She’d call two minutes later and start the conversation over again. She could still dial the numbers that were sitting next to her bed. She started calling strangers so we removed the phone. She didn’t seem to notice. If it wasn’t there, she didn’t think to use it.

I was still taking her to lunch weekly but she seemed to enjoy it less and not even realize she was away from her home. One Sunday on the way back she asked me to buy her some cigarettes. Yes, she was still smoking. It was a real nuisance because she wouldn’t remember to go out onto the patio, which we had chosen because she would be furious if she couldn’t smoke. When we returned to her place, I got out of the car to walk her in and handed her the bag with the cigarettes. She looked at it and then at me. She said, “These aren’t mine.” I said, “Yes they are. You asked me to buy them for you.” She said, “No, you take them. I don’t smoke.” I assume the disease had changed the part of her brain that remembered to smoke.

A few days later Eve tripped and broke her hip. She was taken to the emergency hospital. Before I could even get there, I received a call that they were bringing her back to the apartment. They couldn’t do surgery, she was too old and frail. They could just give her morphine. Within a few days, on June 5, 2007 Eve passed away. As is often the case with the elderly, it was the fall and broken bones that took her life.

Eve was one of those most interesting characters you come across only once in a while. I miss her.

Until soon, I wish you love and great friendships.

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Ten Years of Alzheimer’s Part I

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My dear friend Eve told me, years before her symptoms started to show, that her mother suffered from Alzheimer’s Disease. I believe Eve concluded that she would also have the condition one day. She didn’t verbally share her fears; as with many women of her generation, certain things were believed best kept to oneself. My mother was the same way. They would just bear their burdens silently. Eve was ten years older than my mother, but they were both of a generation where information was not easily attainable. It never occurred to her, as far as I could tell, to speak with a doctor or read about the incidence of the disease in families. You don’t get Alzheimer’s just because your mother had it. Sadly, like with my mother who died of cancer, Eve had experienced a lot of sadness in her life, in relationships, and both of these good women accepted their destinies without question.

Eve and I were social friends through our husbands, who played golf together for 20 years. About a month before he passed, Eve’s husband, who was under treatment for cancer, asked me to prepare the best long-term care insurance policy I could find for Eve. He didn’t tell her anything, just that she had some papers to sign and Patricia was going to take care of things. She didn’t ask questions, just rolled her eyes in the usual way, letting me know that he was trying to control her again. It was a common theme between them. Thank goodness, this time she didn’t argue.

When the policy was ready and I went to their home to deliver it, her husband came to the door and graciously, without asking me to come in, accepted it. Before I could walk away, Eve, who was standing up a few steps on the stairway inside, silently motioned to get my attention. She shook her head slowly from side to side and indicated that she was referring to him. I didn’t understand exactly what she was trying to tell me, but couldn’t ask. I said thank you and goodbye. That was the last time I ever saw her husband.

Eve called us at 7 am the next morning. Her husband had had a massive heart attack during the night and died. She had been trying to tell me that he was in very bad condition. They had been to see his doctor that day who recommended that he not have any more chemo, he was too weak and probably wouldn’t make it through the night if he did. But, he had insisted so they gave it to him.

Eve was now a widow, 77 years old, she had no children and her only living relative was an older brother, whom she hadn’t spoken to since their mother died twenty years previous. She said they had never gotten along and she wasn’t going to be nice to him now! That’s how she spoke when she wanted to appear tough. “Promise me you won’t tell him when I drop dead!” That was an order.

Eve was not just our good friend now, she became one of the family. She had a year or so of the most freedom she had felt in her life. She remodeled her kitchen, went on an expensive cruise with a couple of widowed lady friends of her age and we shared many lovely evenings either out or at her home or ours for dinner and good conversation. We enjoyed each others company, my husband included. I can picture her throwing her slippers at the television during election time when her side was being criticized on the Sunday morning talk shows. She was born and raised in San Antonio; one of those Texas beauties. She had modeled bathing suits for Saks Fifth Avenue when she was eighteen years old. She could shoot a gun, drink whiskey and had been smoking since she was eight years old. But, she was an elegant lady and you couldn’t tell if that huge emerald ring she was wearing next to her diamonds was real or not. She could pull it off. I’m happy she experienced a little fun before things started to change.

In my next blog I will talk about the process we went through from the move out of her home to assisted living and eventually, to a dementia care home. My husband was only two years younger than Eve and in the last two years of her life she lived four minutes, around the corner, from us. That’s the only way I could take care of them both. It was a little tricky at times, but I have angels sitting on my shoulder, my friend Lori tells me. They’re making sure I don’t have more to do than I can handle. She must be right. So far so good!

Until soon, I wish you love and angels on your shoulder!

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What is Your Gut Telling You?

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The reason we Caregivers need to speak to someone else occasionally about our current situation is because we need another prospective. We need to see through someone else’s eyes or hear someone else’s experience regarding our concerns. The behavior of the person in our charge may be coming from a place that’s more easily understood by someone who understands them better than we do or has experience with a certain, maybe new, behavior.

I’ve found that Caregivers come in all stripes. There is no particular criteria that determines who will be a Caregiver and who won’t. It seems to be more about who’s willing to take on the task or feel they have no choice but to take care of another. That’s why as I focus on a particular Caregiving case I want to hear everything about the people involved and where their difficulty comes in. It’s not predictable, the players don’t follow a pattern.

I want to encourage personal growth for the Caregiver. Your personal reward will be in a job well done. One thing I’ve worked on over the years is developing more of my own right brain, intuitive side. I’ve learned to trust that subtle little idea that pops into my head. Today I often trust it more than what my eyes are seeing. Our instincts can tell us so much more than we are sometimes conditioned to recognize. When you can step back and ask what your gut is telling you, and investigate that a little more, you often find out your instincts were right. How intuitive are you? Do you trust your instincts?

Maybe you’re very intuitive, and tend to take on everyone else’s emotion. I know that can be painful for some, they feel too much. I think we’re looking for balance here. How do you become more objective and step back? These are important issues. A Caregiver needs to know how to be less involved emotionally in this case.

This website is a source of information specifically designed to help Caregivers. It’s loaded with stories about my own and other peoples Caregiving experiences so you have a resource. Because we can all only get better at what we do if we are well informed, I invite you to ask a question, send a message or tell me a story. And, please, keep reading and growing.

I wish you love and balance.

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Are You Having Any Fun?

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I remember, during the last years of my husbands life, having a lump in my throat when I would think about what it had been like to have a little fun, in the old days. I couldn’t tell anyone I was starving for a life. That would really have brought on the tears, and what good would that have done? I was in it to do the best job anybody could possibly do for someone they loved and this was part of it. Suck it up.

The thought of going to a movie and being a little carefree, maybe having some dinner with a friend seemed so far from possible that I really didn’t think of it. Most of my family wasn’t close by and I needed to be home in the evenings, there was a lot to be done at that hour. What I did do was meet a friend for coffee for an hour, maybe once a month, on a Monday or Wednesday morning when my help was there from 8:30 to 11:30 AM. I could run to the grocery store, bank or drug store and wrap that around coffee. I really enjoyed those mornings out. My friends had no idea how much that time meant to me. On Sundays, when our grandson was with him from noon to 5 PM I would run errands, shop and eat a meal out (what a treat). Most friends aren’t available on Sunday. They have families of their own to be with so I was alone; much better than nothing, believe me. Everyone should have a grandson like ours.

When I ask Caregivers what they would consider really fun right now, it’s amazing how simple it would be to bring them great pleasure. People tend to assume they can’t arrange things or they aren’t available. Not every caregiver is off limits for social activity all the time. Families could get creative and take turns seeing that a Caregiver has some fun and really be doing something great.

What is fun? For me, fun is when you share food and conversation with other people. I remember a couple of neighbors on my street having jewelry or tupperware parties during my “confinement”. I was able to leave the house for twenty minutes at a time then, so I or someone else checked on my husband periodically while he was listening to TV (he was blind), and I could drink my coffee and chat. People can be wonderful if they just know what they can do. Caregivers tell me that if a friend would come and visit or invite them over for a glass of wine or a beer and conversation with other adults, that would be great. To go to a movie or a play would be a huge treat. Two family members or friends might arrange the care sitting and night out. If you get a few friends together and go to the Caregiver’s place for coffee, that would be an easy diversion. How about a poker night at the Caregiver’s place? Suggest it or something similar?!

When my husband was still able to go out in a wheel chair, our next door neighbor, a truly kind man, would take him and two other elderly men from the neighborhood out to lunch. They would all chip in and really enjoy their time together on Tuesdays. That gave me some cherished time, too.

I hope I’ve sparked an idea or two for my readers. We’re all going to be in a position of needing the generosity of other people at some time in our lives. Let your creativity shine and you’ll be prepared to let others know what you need when your time comes.

I wish you love and fun.

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But, I Never Wanted to be a Nurse!

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When I was in high school girls who took “college prep” courses were expected to become a teacher, a nurse or a secretary. I never wanted to be any of those professions. My test scores indicated that I should become a mechanical engineer. In my mind, girls didn’t become engineers. I took a traditional path; got married and had children at a young age. I went to college later and got a bachelor’s degree in financial accounting because I still couldn’t figure out what I wanted to be and I had a head for figures. Nursing was the last profession for me and because English was my worst subject, you know I shunned being a secretary or a teacher.

It often takes a lifetime of many experiences to figure out who we are. It was my image of a being a “classroom” teacher of children, a “hospital” nurse or an “office” secretary that I was opposed to, I realize that now. Eventually, I became all three! Just not in those settings.

As a Caregiver, we often spend time sitting with our loved one in silence. One of the advantages of that is the opportunity to reflect on our lives. It’s a chance to examine where we’ve been and why those experiences had to take place in order to prepare us for our next adventure. I use my own life here as an example of the variety of experiences it takes to gain the skills that were needed to be an effective Caregiver and lead me to my life’s work.

Do you know how talented you are; how many skills it takes to do anything that’s needed as needed? On the spot we learn to administer medications with needles and through tubes, perform nursing tasks that are usually done behind the closed curtain in a hospital, we deal with time consuming administrative and legal issues, we orchestrate the management of a household and all it’s upkeep under unusual circumstances. When someone comes in to relieve us we teach them all the things they need to know to keep things going temporarily. We’re nurses, teachers and secretaries whether we know it or not. We’re, also, engineers and accountants and students.

With all your talents, what are you going to do next? When you’re sitting in the silence, maybe while the person in your charge is sleeping and you have time to reflect, I hope you let go of the difficult side of your tasks for a while and dream; dig deep down inside yourself about what would make you happy. It doesn’t have to be rational, practical or appear doable. Dreams are part of who we are, to be taken advantage of in a big way. They can come true if we nurture them and love ourselves enough to believe that we can do anything if we set our minds to it; after all, you’re doing the impossible now. Maybe reading or studying, while you’re in the position you’re in, about something that you have always been interested in, could be an inspiration for your next adventure.

When I was at home for three and a half years taking care of my husband, I would take the time when possible to get on the computer. Sometimes I would go to Google Earth and explore the streets of the towns in Southern Italy and Sicily where my grandfather and father were born. I would look at the shops and restaurants near the addresses of my family who still live there. I knew none of these relatives, but, I had the feeling that I wanted to know them. I didn’t even speak the language. Eventually, after my husband passed, I studied the language a bit and then it came about that I had the opportunity to go there and meet them. The trip was MERAVIGLIOSO (WONDERFUL)!

I believe that by focusing on my future and not on my current difficulties or isolation, I created the opportunity to take that wonderful trip to Italy. The dreaming took me out of my current situation temporarily, a respite. By improving my mood it helped me appreciate the time I had with my husband and see it as a labor of love and not an obligation. Caregiving is really hard, but we don’t want to lose ourselves in the difficulty and miss the opportunity to stay close to the one we care for. Mostly, we don’t want to lose ourselves. No regrets!

I wish you love and adventure!

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