I Give Thanks

The turkey was in the oven and roasting as Mom slept. Two Feather came down and we sat upstairs sipping our morning coffee and talking about the two Thanksgiving dinners I’d prepared at our house. We’d only been together two years when I moved in with Mom to take care of her. Since then, we’ve had all our holiday meals here at her house. We talked about how we were just getting to know each other and learning how to live with each other when I had to move here; and we talked about how we’ll need to learn that all over again when the time comes for me to move back.

I have so much to be thankful for. Not just today, but every day. Every day is difficult for Two Feather and I being apart, but holidays are an especially difficult time. He’s been so very patient with me in my care giving for Mom and I know he’s terribly lonely each evening as he sits in our house alone while I’m down here at Mom’s. I’m so thankful that he’s as understanding and caring as he is. For him, I give thanks; for without him, his support, and his shoulder to cry on, my care giving would be so much more difficult.

I had a very loving and caring father who made so many wonderful memories for me. Everything I know about carpentry, roofing, electrical work, plumbing, butchering, farming, gardening—well everything I know about almost everything, I learned from him. Mom taught me all the ladylike things, like cooking, cleaning, ironing, baking, and canning. They both taught me to be respectful, honest, and true to myself. For my parents, I give thanks. I couldn’t have asked for better parents if I were to pick them out myself.

I miss my dad terribly during the holidays, and in the ten years that he’s been gone; my mom has taken his chair at the head of the table, whether dinner was at my house or hers. Today, as everyone filled their plates with the holiday dinner, I thought how lucky I am to be here—to still be alive to enjoy each and every day with my family, whether it is at a dinner table or a conversation on the phone. Stacey called this morning and wished me a Happy Thanksgiving. Trinity and Quenton got on the phone and I talked to them, too. I give thanks that the Creator allowed me to live to have two wonderful daughters of my own, who in turn gave me grandchildren. For my life, my children, and my grandchildren, I give thanks.

I thought of all my caregiver friends and said a silent prayer for those who would be spending their first Thanksgiving without their loved ones. I wished for them to have a happy holiday knowing that their loved ones are at peace, and hoped they would be surrounded with love. And I wished a “good day” for those who are still caring for their loved ones. For my caregiver friends and all their support, I give thanks. I hope your day was as wonderful as mine was.

Quietly I watched everyone eat dinner; Katie sitting at the table eating with grown up silverware, and everyone adding to their plates. I paid particular attention to Mom. I’d filled Mom’s plate with a little of everything from each bowl, and with each spoonful said a silent prayer of thanks for another day with Mom, my family, and for the food. The most anyone said while eating was how good everything tasted. We were too busy eating to say much else.



Each time Mom took a bite of food she told me everything was delicious and thanked me for making the meal. After each bite she would look up at everyone around the table, look down at her plate, fill her fork, and tell me it was delicious. I watched and listened each time she filled her fork. By the time everyone was finished eating, Mom had finished her whole plate of food, too! She said, “That was delicious, honey. I’m full.” I said, “I’m so proud of you, Mom. That’s the most you’ve eaten in a long time.” She said, “Really?” I said, “Really! And I’m so happy you ate so well.”

I turned my head to hide my tears. Two Feather saw them. I know he knew what the tears were for. Angel and Tim saw them, too. I’m pretty sure they knew why I had tears in my eyes, too.

For Mom eating, I give thanks.

Love you, everyone. Happy Thanksgiving!!

Weekend and Half the Week Gone--Sincere Sympathies to Caregiver Friends

This past weekend was a nightmare, because of nightmares. Saturday night Mom was up 15 times. She’d no sooner get to sleep and she was awake again because of a dream she kept having about someone chasing her and trying to hurt her. Then, the person in the dream was trying to hurt both of us. I felt so bad for her because each time she awoke, she thought she’d been awake and thought the dream was real. She asked me to walk around the house and check all the locks.

It’s amazing how she can be up most of the night, catch a few winks in between, and only show the normal tiredness she shows after a good night’s sleep. Normally when this happens, she gets exhausted around 2:00 and I have to keep her interested in different activities, forcing her to stay awake at least until 4:00 so she can eat dinner and sit up a while for her food to digest some before she goes to bed.

Sunday morning between 8:00 and 9:00 she was up and down 20 times thinking she had to go to the bathroom and feeling like she was going to vomit. Neither of which came to fruition. Each of those 20 times, before trying to get out of bed, she yelled, “Joannnnne, help me!” She’s not running a fever, she was just checked for a UTI, so that’s not the problem. She’s always had an overactive bladder. Her brain is simply malfunctioning and she doesn’t realize she’s been up and down so many times.

Those who care for someone suffering with Alzheimer’s know that a person with AD will get up and wander or roam the house, or think they need to go to the bathroom, when they don’t, or they simply want to go home, not realizing they are in their own home. Some caregivers are up and down with their loved ones 30-50-70 times a night, with no exaggeration, for various reasons. My heart aches for them.

There is no predicting whether or not your loved one will have a good day/night or bad one. You take one day at a time, and one moment at a time. Everything and anything can change from one instance to the next. Just when you think you might have something figured out, it all changes.

Since the weekend, we’ve had the physical therapist and occupational therapist in two more times. Wednesday, the social worker from the hospital came and talked to me about resources available through their office and she discussed getting things in place for hospice when it is needed. She’ll be coming back with more information on Monday.

*** In Memory of Those Who Have Passed ***
I’d like to extend my sincere sympathies to my caregiver friends who have recently lost their loved ones. My thoughts and prayers will be with you during this difficult time. For Lori, Nancy, Terry, Shirl, and so, so many others who have been down this path, please take care of yourselves. Know that I’m thinking of you and keeping you in my heart.

***
For all caregiver friends who continue on this path with their loved ones, know that I also keep your loved ones, you, and your families in my thoughts and prayers. While you care for your loved ones, please take care of yourselves as well.

((HUGS)) to all. Thank you for being you!!!

Alzheimer’s Disease Progressing—Mom in Hospital and Home Again

I know I haven’t been here for a while. Things have been hectic to say the least.

A few weeks ago Mom was able to get up out of bed and dress by herself with very little help. One morning she woke and seemed very different to me. She didn’t know what her clothes were and couldn’t figure out how to put them on when I placed them on her bed. She had no clue what to do.

Her smile was still full, she was still able to stand and walk, she had use of both arms and hands; she just seemed weak and confused. It was like she came off her plateau and dropped down suddenly.

The rest of the week she still needed help dressing, and still seemed more confused than she had been.

So here we are in another stage of this horrible disease called Alzheimer’s.

She was complaining of being dizzy when she stood up. At Adult Day Care they said she also complained of being dizzy, but also when she was sitting. Each time she complained of being dizzy, her blood pressure and blood glucose were checked and they were normal. The Day Care attendants checked them too and said the same thing.

I called her doctor, explained the situation and he told me to take her to the ER. When we got there, I insisted that a neurologist be brought in and insisted she be admitted for observation. After four hours in the ER, they finally called her doctor and she was admitted.

A CT Scan done while in the emergency room showed that she had an older Lacunar stroke. They stated that it could have happened anywhere from a week to a few years ago. They told me that there was nothing I could have done because these type strokes show little to no difference. It most likely happened in her sleep, they said.

When I’d heard this, I could pretty much pinpoint when it happened. One day she was dressing herself, when she woke up the next morning she was different as I explained before; unable to recognize her clothing, unable to dress herself, totally confused, and a little weaker.

For the next day and half I was running to the hospital, talking with doctors, neurologists, social workers, nurses, physical therapists, occupational therapists, and working out some kind of schedule to have all these people come to her house for the therapy she needed.

Her doctor suggested I place her in a skilled nursing facility for rehab in order for her to get her therapy and for me to have some respite care. I told him I would rather have her home because a facility would confuse her more. He totally understood and commended me for the decisions I was making in the best interest of my mother. He told me I was doing a wonderful job and encouraged me to continue to keep her home, in her environment. His encouragement and thoughtfullness was all I needed to give me that extra ounce of strength to continue doing what I'm doing. Caregivers don't hear much encouragement, and when one hears it from a doctor, it affirms that what we are doing is the best for our loved one.

Her doctor and the neurologist stated that she was in the severe stage of Alzheimer's. I'd already known that, but at least I now know for certain that I was correct in my thoughts of her progression and it was verified by doctors. It doesn't take much to understand the disease when you watch it's progression and you're dealing with it everyday. Even the slightest change is noticeable.

Today I brought her home from the hospital at 3:00 and we were back in our routine. Just a little slower now because she’s walking with a walker. She was once again exhausted and in bed by 4:00. I knew I needed to get all the rest I could because the team of therapists and nurses were scheduled to start tomorrow.

When she fell asleep, so did I.

Then the phone woke me up. Nevermind about that. I won’t even get into it here. It’s not worth it!

Back on Mom’s Schedule—Back to Unneeded Stress

Monday, August 27, 2007

It felt great sleeping in for two days but I’m back to waking up at 5:30 or 6:00 and back to sticking with Mom’s schedule. I woke her at the usual time of 6:30, washed and dressed her, took her blood glucose test for her diabetes, had her take her pills, and guided her out the door and into the car to take her to the Day Care.

The sun was shining on my deck when I arrived and Two Feather and I sat outside and enjoyed our morning cup of coffee together. Neither of us felt like doing much so we just sat and enjoyed the sun and talked about the projects we need to do around our house and Mom’s.

My flowerbeds are overgrown with weeds and wild grapevines from the woods surrounding the house have stretched into the yard and over the fence. When fall comes and trees and bushes lose their leaves, we’ll have a major project on our hands.

I called for estimates last week to have a few trees removed from Mom’s because they are a threat to the house and telephone and electric lines. I also asked for an estimate to have the leaning trees removed from behind my garage and along the side of my house. Better to be safe than sorry.

Two Feather and I talked about how we’ve neglected our house and yard because we don’t really have the time to take care of it after we take care of Mom’s place. We’ll eventually get the work done at our house. It may take some time, but we’ll whittle away at it little by little. We will have to start working on it in the next month or so in order to make any progress before winter sets in.

Today was a beautiful day, sun shining and not too humid, and discussing our thoughts on sprucing up the place gave us something to talk and think about. The time seemed to fly and before we knew it the time had come for me to leave to pick up Mom at the Day Care.

The nurses at the Day Care told me Mom didn’t have a good day. She was moody all day and had several incontinent accidents. That was apparent to me when I walked in because Mom had on the “spare clothing” I’d given the Day Care in case of accidents.

On the ride home, Mom’s mood didn’t seem to be any better. Mom didn’t remember that she had been cleaned and changed at Day Care. I guess one of the good things about Alzheimer’s disease is that the loved one forgets they were embarrassed. Unfortunately, the feeling of embarrassment seems to stick with them in an uncertain way. It changes their mood and they can’t remember why they’re angry, but the anger lingers.

Mom didn’t make it to the bathroom once we arrived at home, so I ended up putting her in the shower again. Then, she remembered what happened during the day and became angrier.

“I hate this,” she said. “I did this all day.”

“I know, Mom. Don’t worry about it. Sometimes we have accidents. Let’s get you cleaned up and you’ll feel better.”

She cried the entire time she was in the shower.

Needless to say, after those type incidents, making dinner and trying to eat is a challenge for the caregiver. What appetite one may have had, is gone. In most cases, the loved one normally forgets the incident, sits down to a nice meal, and wonders why you’re not eating dinner, too.

Mom’s appetite isn’t what it used to be. The diabetic diet isn’t the problem, but the amount of food is. It used to be that she could eat the limited card-deck-size piece of meat, the potato or starch, and the vegetables, and ask for more. Lately, I’m lucky if I can get her to eat half of that before she tells me she’s full. Tonight she ate only a few pieces of chicken, a few bites of baked potato, a few teaspoons full of applesauce, and no vegetables.

We sat at the kitchen table and talked for a few minutes and she began to doze as we talked. We were running a bit behind her normal schedule because of the shower, so by 5:45 she was ready for bed; by 6:00 I could hear her snoring through the baby monitor. She’d had a long, hard day with all her accidents and mood swings, and the continued louder pitch of her snoring told me she was totally exhausted.

Two Feather normally comes down to visit me after Mom is asleep. She’s been aware of this since I moved in and said she feels better when he’s here. She’s even told him he should move in, too, but he respects her too much to have her embarrassed by the possibility of him seeing her walking through the house half dressed at times. He always side-steps this offer by saying, “I appreciate the offer, Mother, but I need to take care of our house, too.” She’s content with that.

We sit upstairs and quietly talk for about 30 minutes and he goes back home. This evening because Mom and I were running behind schedule, his visit was later than normal. He came down around 6:30. Just before he was getting ready to leave at 7:00 PM Mom’s phone rang.

Everyone in the family knows Mom goes to bed early and has been directed to call my cell phone if they need to call after 4:30 PM, so I figured it was a telephone solicitor.

Boy was I wrong. It was my brother. He called to ask me why there were stakes and rope at the top of the path. I told him that after the recent storm the path was blocked with trees and Two Feather put up the stakes and rope because he’d be working down there with his chainsaw. He knows his grandchildren play in his yard and he wanted to make sure no one came near there when he began to work on cutting up the fallen trees.

“That’s not why you put them up,” he said. “You put them up to make a point!”

I’m so tire of my brother and his attitude. The only time he calls “me” is to bitch about something.

“What the hell point would I be trying to make by staking and roping off a path that you haven’t used in three years?” I said. “You haven’t used that path since you told me to tell Two Feather he had to cut the grass because you were going on vacation. You haven’t been back to cut the grass or do anything around Mom’s house since. Do you realize how ridiculous and childish you sound?”

“You put them up to make a point,” he repeated.

“So you’re calling me a liar?”

“Yes,” he said.

“Two Feather has never cut wood close to someone’s yard before. I don’t appreciate being called a liar. Excuse me for the fact that Two Feather shows consideration to everyone. I don’t need to explain to you what Two Feather or I do on Mom’s property, and I’m really sick of your childish nonsense. Why don’t you grow up? By the way, what time is it?” I asked.

“Seven, why?”

“What time does Mom go to bed?”

“Five.”

“So, why are you calling her home phone at 7:00 PM? You know to call my cell phone after 4:30. And since you called only to start childish nonsense again, let me remind you that you’re not to stop by the house without calling and verifying if it’s a convenient time.”

“There was no problem when Angel was there.”

“You don’t see barging in on someone else’s visit a problem, I’m sure. But problem or not, it’s a matter of courtesy toward my mother. I either don’t answer the phone because we’re not home or I’m busy with her. Busy can mean many things: She has company, I’m giving her a shower, cleaning up her bed after an accident, cleaning her up after an accident, or her mood and agitation level is bad. The last thing she needs is you just stopping by when we’re ‘busy’ with something like that.”

After a few more insults from my brother bringing up past garbage that has nothing to do with Mom and her illness, I gave up and hung up the phone. I’m so tired of his intimidation tactics and his attitude toward me, and his lack of consideration and courtesy toward my mother.

I’ve sent him information about Alzheimer’s Disease so he could get a better picture of what is going on; to help him understand. I even marked off the stages that she’s already been through. I’d think that he’d have some clue since my dad had this disease as well and died from it nearly 10 years ago.

Sometimes caregivers can explain until they’re blue in the face, the need to keep the loved ones on a schedule, the many things that can and usually do happen during the course of a day, the need to clean and change the loved one, the moods, the agitation, etc., but some people just don’t get it!

The End of My Respite Care Weekend

I slept in again this morning, which not only delayed but also put a halt to the idea Two Feather and I had for today. We thought about going to an open-air flea market in Kirwin Heights where we used to set up his Indian art. We haven’t been there for three years. It’s an early market, though, most vendors are set up at 6:00 AM and leave by 1:00 PM, so it was senseless for us to drive the 45 minutes knowing most of the vendors would be packing up to leave.

Two Feather and I spent the morning talking about how odd it felt to sit on our deck and enjoy our morning cups of coffee together as we did every morning before I moved in with Mom. We reminisced about the powwows and gatherings we had enjoyed and talked about what we might do with our time when the day comes that we’ll be together again.

That discussion didn’t last long because we both felt it was somewhat wrong to discuss a future when the alternative meant that Mom would no longer be here. Yes, we miss our life together, but neither of us would wish for the inevitable to come sooner in order for that future to happen. Our life together was and is precious but having Mom around is too.

We also talked about something that disturbed me on Saturday evening after I called to check to make sure things were running smoothly with Mom and Angel. My brother has been given specific instructions to call and arrange a time for his visits. He’s been told that if I don’t answer the phone we’re either not home or I’m busy with Mom. “Busy” could mean I’m giving her a shower, cleaning up a soiled bed, cleaning accidents on carpeting, or cleaning up Mom after an incontinent accident.

Lately, if I don’t answer the phone and call him back to his immediate satisfaction, he’s been showing up at the house unannounced. He’s found no one home and drives back to his house. I know this because he left a message saying that he stopped by and for us to call when we got back home. When he has shown up during one of the above mentioned busy times, I’ve called him when I’m finished and asked him not to just show up. He accusing me of “not letting” him see my mom. He tunes out what he doesn’t want to hear and exaggerates what he thinks he hears. His response has always been that he doesn’t have to listen to what I say, and his attitude is that he can do whatever he wants, whenever he wants, with no regard to anyone but himself.

The last thing Mom or I need is for him to push his weight around after dealing with one of the situations that I mentioned above. Each of those situations changes Mom’s mood and the mood that results from them is seldom easy to deal with. It takes her an hour or two to get over her anger of incontinence and her anger that she has to take a shower. Most Alzheimer’s patients despise getting in the shower. Any caregiver can tell you that performing daily hygiene is no easy task.

Saturday evening when I called Angel, she told me my brother “showed up” without receiving a call back. Needless to say, this put a damper on the only respite care I’ve had in more than a year. Mom isn’t comfortable with him visiting when I’m not around. I was a bit disappointed in the events that took place and unfortunately expressed that disappointed to my daughter. If I had paid a home health nurse to stay with Mom, that person wouldn’t have known my brother from a rock, and therefore would not be obligated to open the door. I did however understand that Angel was put between a rock and a hard place trying to enforce the simple request I’ve made to my brother, over and over again. She didn’t want to deal with him any more than I do. She’s heard about the outrageous nonsense I deal with from him, and sometimes it’s better to totally ignore people who just don’t get it.

Rather than cause a scene, in front of my mother, and her grandmother, she told him he could visit for a little while, but he’d have to leave soon because she was getting ready to make Mom’s lunch.

Not only did he not comply with my request of him not just showing up, but also he infringed on the time my daughter took out of her busy life (driving four hours from her home) to share with her grandmother. Both, in my opinion, were just more representations of the rudeness and lack of consideration my brother shows. It never ceases to amaze me why some people think they aren’t obligated to comply with the guidelines set forth by the caregiver for the comfort, health, and welfare of a loved one.

I returned to Mom’s house at 3:00 PM so Angel could drive the four hours and be home before dark. She didn’t leave until 4:00 due to the frustration I showed and the discussion we had over this matter. Even leaving an hour later would have put her at home before dark and before Katie’s bedtime at 8:00 PM.

When I didn’t receive a call from Angel by 9:00 to tell me she arrived home safely, I became concerned and called her cell phone. She called back about fifteen minutes later. I could hear the frustration in her voice. Some of it may have been from the conversation we had, but most of it was because she was still driving and hadn’t made it home yet. She’d gone through Pittsburgh, instead of taking the turnpike from Cranberry, and she hadn’t realized one of the Pittsburgh tunnels had been closed. It took her two hours to drive the long way around Pittsburgh to get back near the turnpike. She missed her daughter all weekend, and she missed getting home on time to put her in bed for the night. Her frustration turned to tears and I couldn’t help but feel horribly guilty that I’d taken her away from her daughter and husband for a weekend.

The conversation she and I had before she left wasn’t important now. We both agreed that things should be different with my brother, but regardless of how anything is approached with him, he puts up an automatic defense attitude that gets in the way of any conversation, especially when it comes to me.

Mom had a fairly decent weekend while Angel was there. No accidents. No messes to clean up. Angel got a small taste of what I deal with each and every day taking care of Mom. She also got a taste of what it’s like to miss her own normalcy too. She told me she doesn’t know how I do what I do, and I told her I do it because I love my mother. She reminded me that I should take more time like this so that I live long enough to enjoy a life after Mom. And I reminded her that sometimes it’s easier just to continue what I’m doing rather than deal with the added problems resulting from leaving Mom for a day or so.

It’s difficult not feeling guilty for wanting a day to spend with my significant other, or just a day to spend on my own. The repercussions that result from me being away add to the already difficult task of care giving. Two nights and one day without my presence set Mom back a few notches. All evening she asked if I was going to stay the night and she cried. She said, it was nice visiting with Angel, but she didn’t want me to be away from her again. She was afraid I wasn’t going to come back. She told me she wasn’t comfortable with my brother visiting when I wasn’t home. All evening, after she was in bed, she kept calling out to me to make sure I was still around and to make sure no one else was in the house. Each time she called out for me, I’d go downstairs and reassure her that I’m home and wasn’t leaving again and the only people in the house were us. Five hours, every twenty minutes or so, I’d repeat the same thing: go downstairs, tell her I’m here and staying, we’re the only people in the house, and I’d go back upstairs. She finally fell asleep, exhausted, around 10:00 PM.

Going away for a weekend is just not worth it to me if it’s going to affect Mom this way. I care more about her than I do myself and the anguish caused to her by me being gone for a few days does me no good either. We’ll see what tomorrow brings, but I can place bets that tomorrow I’ll be asked if I’m staying the night again. This is just one more perfect example of how changing the schedule or routine of an Alzheimer’s patient can throw them into a more confused state.

Health care workers tell caregivers to take time like this to relax and recoup some strength. The nurses at the Day Care keep telling me I need to take time for myself. They say, “It may confuse her or make her angry, but she’ll get over it. She’ll forget.” Granted I need to keep up my own health in order to take care of Mom, and respite time allows the caregiver to relax and unwind. But whether Mom forgets within a few days that I was away or not, I just don’t know if I agree that it’s worth adding to her confusion and causing her unneeded anxiety. I’d rather her feel comfortable and secure and her know that I’ll be here until her last day on this earth. She knows she can depend on me and I can’t take that security from her, ever again.

Alzheimer's -- Living Day by Day, Moment to Moment

In my last post, I showed you pictures of my daughter’s visit last weekend. Those were the good points of the visit; snap shots of family members who drive for hours to visit Mom and me once a month with hopes that she’ll remember them just a little bit longer.

With Alzheimer’s Disease you never know from one moment to the next what your loved one remembers, or what they don’t. You can only hope that each day as a caregiver you’ve made them comfortable, given them the loving support they need to live with dignity, and pray that when they wake in the morning, they remember who you are. And when the day comes that they ask, “Who are you?” you pray for the strength to hold back the tears and answer.

Even as often as my daughters Angel and Stacey visit, my mom didn’t recognize my daughter Stacey this past weekend. Mom watched her as she talked, spoke to her as if she knew her, then, she asked, “Do you have kids?” Stacey smiled, and without hesitation said, “Yes, two. My daughter, Trinity, is seven, and my son, Quenton, is two.” My heart ached for my daughter because Mom didn’t know her; my daughter’s heart ached for her grandmother’s memory loss, rather than for herself.

I’m proud of both my daughters, for understanding the disease, for taking the time out of their busy schedules and making it a point to travel four hours to visit, and for being the loving daughters and granddaughters they are.

It’s sad watching my mom’s mind fade. I see a piece of her slip away each day. I miss my mom; the vibrant happy woman who was always so excited to see her grandchildren and great-grandchildren visit; the woman who talked to me, mother to daughter, for hours; the woman who gave me life and loved me unconditionally. Yes, my mom is still here, but the person she was is gone.

She moves slower and slower each day. I dress her in the morning; get her situated in her chair at the kitchen table, talk to her while I make her breakfast, and watch her expressions to tell me what kind of day she will have. If she has difficulty finding her mouth with the utensils, I know she’s having a bad day. Though she’s overweight for her size, she’s not lost weight with her diminished appetite. She struggles to get out of her chair and I come to her aid. She ain’t heavy, she’s my mother.

Mom’s always tired by 4:00 PM, but I’ve noticed in the last week that she seems more exhausted than usual. Less talkative and less aware of her surroundings. The intermittent memories are no longer coming back to her. Out of sight, out of mind.

Yesterday morning we were sitting in the living room and I noticed her frown as her eyes scanned the many pictures on her bookshelf. I didn’t need to ask if she knew the people in the photographs. The wrinkles in her forehead told me she wondered who they were. I stood up, walked to the pictures, pulled them off the shelf, and took them to her. I handed her a photo of my dad. She knew Dad. The next two photos were of her grandson, his wife, and two daughters. She had no idea who they were. The next picture was of my brother, her oldest son, and his wife. She said they looked like someone she knew, but she didn’t know who they were. The next picture was of my second brother, her son, and his wife, but she didn’t know them either. The next picture was a four-generation picture taken five years ago with her, my two daughters, my granddaughter and me. She knew herself.

I placed the pictures back on the shelf and prayed for strength in handling the next stage of Alzheimer’s disease.

When my mom didn’t recognize my daughter last weekend, I thought Mom slipped to a new stage in the disease. When she didn’t recall the visit after a reminding prompt, I knew.

We moved from the living room to the kitchen for an early lunch. She looked around as she sat and said, “Dad built those cabinets. I remember because you told me he did.” I answered, “Yes, he did. He was a wonderful carpenter.”

I turned to smile at her and saw her eyes filled with tears and her chin quiver as she struggled to speak. “Was? You mean he’s gone? Did he pass away? When?” As she sobbed, I knelt next to her chair to comfort her. I held her, wishing I could do more than apologize for not realizing she didn’t remember he was gone. “I thought he was at work,” she said, as I dried her tears. My dad passed away nine years ago. Last week she remembered that. Today, she didn’t.

My brother called and said he was coming to visit. When he walked in the door, I knew she didn’t recognize him. I asked her if she knew who he was. She said “no”.

That was yesterday. Today was not better.

I woke up Mom as I normally do every morning, placed her clothes on the bed, and walked her to the bathroom. Before we made it to the bathroom door she began to sob uncontrollably. I sat her in the kitchen chair and asked her what was wrong. Her words shocked me. “I’m dying,” she said. My mom never speaks of death and if the subject is ever brought up, she changes it. For her to say she’s dying was an utter shock to me. “Why do you say that, Mom?” I asked. Her answer was short, quick, and heartbreaking. “Because I am. I can feel it, and I’m scared.”

I did the only thing I knew to do, hug her. And I responded with the first thing that came to my mind, my dad.

“Mom, don’t be afraid. When it’s your time, you’ll be with Dad again, and that’s something to look forward to.”

“You’re right,” she said. “I never thought of it like that.”

She dried her tears and we continued with our day; getting her shower, getting her dressed, and getting her breakfast. The day continued on a similar note with her watching me in the same way she watched my daughter last week. She talked, constantly asking questions; she asked about her house, how long she’s lived there, where was my husband and why doesn’t he stay here with her and me, and she asked if I’d be okay when she died.

“I’ll be okay, Mom. Don’t worry about me.”

As the day progressed, she regressed, and by 4:00 PM she was once again exhausted. She wanted to go to bed earlier than usual, and after the rough weekend we’d had, I was inclined to agree, so we started our bedtime routine.

Every night for the past three years my mom has said the same words to me as I dress her for bed. “Thank you, honey, for staying with me and taking care of me. You’re a wonderful daughter and I love you.”

Tonight, she didn’t say those words.

Tonight, she asked, “Who are you?”

I bit my lip, held back the tears and said, “I’m your daughter.”

Her eyes brightened and she gasped, “You’re my daughter. That’s wonderful!”

“Do you know my name?” I asked.

“No, will you tell me?”

“Joanne. My name is Joanne, Mom.”

“That’s a beautiful name. Did I give it to you?”

“Yes, Mom. You did.”

I hugged Mom, kissed her, and tucked her into bed as usual.

“I love you, Mom.”

“I love you, too. You’d better get some sleep. You’re going to need it,” she said.

“Good night. I’ll see you in the morning.”

“I don’t think so. Get some sleep. You’re going to need it,” she said again.
I kissed her forehead and walked out of her room repeating, “I love you, Mom. Good night. I’ll see you in the morning.”

Since then, for the past six hours, I’ve been sitting in my room upstairs, in deep thought-- a sort of stunned, dazed frame of mind. Each day for three years I’ve never known what the next day might bring. We’ve lived day by day, moment to moment, not knowing what the next moment might be like, but I’ve cherished every moment I’ve had with her.

I don’t know what tomorrow might bring, but with her strange discussions this weekend, I do know I’ll be staying close to her side, rather than listening to her breathing come through a baby monitor in my room.

For her sake, when it is her time, I pray she passes peacefully in her sleep. And when she does, I know she’ll be in a better place and she’ll be okay.

I didn’t have the heart to tell her, I won’t.

Good night, Mom. I love you. I’ll see you in the morning.

Alzheimer’s article BC Magazine Editors’ Pick

My article “Alzheimer’s: Tips on Understanding the Disease and its Limitations” has made the news again.

Each week the BlogCritic editors choose top story picks for each section of news. My article made BC Magazine Editors’ Picks: Febrary 5 through February 11 in the Culture section of the magazine.

Here's what Editor Diana Hartman had to say.

CULTURE
From Culture Editor Diana Hartman:

The title says it all. In Alzheimer's: Tips on Understanding the Disease and its Limitations Joanne D. Kiggins compassionately reveals the often ignored side of Alzheimer's (the caretakers) to those who may have overlooked the intensity and demands of caring for others.

Thank you Diana for picking my article as a feature for the week.

A Tribute to My Significant Other Two Feather

Last week I went grocery shopping. My Significant Other, Two Feather, who always helps me with mundane chores, carried more than a dozen grocery bags into my mom’s house for me, and waited patiently while I hurriedly unpacked the bags and placed the groceries where they belong.

He’s such a patient and understanding man to live separate from me, alone in my house, while I live with Mom in hers as her caregiver. We have few hours together each week, yet he hasn’t complained that those few hours are spent helping me with the everyday needs like shopping, taking Mom’s dog to the groomer, picking up her medication, and having only an hour left to spend quality time together.

Every day he travels through the woods, through all types of weather. He shovels the snow from the sidewalk, plows the driveway, gets the mail and paper, fixes things around the house, takes the garbage to the end of the driveway every week, and does everything that needs done. All this from a man who has no vested interest except love and respect—to make sure that my mother and I are well, and that there will be something left of me, for him, when my days of care giving are complete.

I mention these things not only because Two Feather is my rock and my foundation, but because he said something to me that day that I wish others could see in me as well. Others, who should see it and should know it, but can’t see past their contempt for me.

He said, “What you’re doing is an honorable thing, Joanne. You’re a good, caring and loving person. People who can’t see the kindness, love, and unselfishness you have in your heart, are not worth your stress.”

He’s right, of course, my daughters have told me the same thing. But there’s that part of me that WAS unwilling to give up. That “STUPID” part of my brain and heart that tells me to keep trying—to try and make people realize I’m not the person they think so lowly of.

It wasn’t until Two Feather said this, that I realized I need to quit trying. It’s not my job to conciliate or placate others to help them understand me. It’s not worth my time to try, and then end up belittled, scorned, or hung up on when I’m trying to speak from my heart. It’s not worth the heartache and stress.

So, I’m going to cherish those who do understand me, those who do make an effort, and those who do know me for who I am. And I’m going to cherish the time I have with my mom and ensure that whatever time she has left on this earth will be filled with the love I have to offer, selflessly. The least I can do for a woman who gave me life is to give it back, day by day, and know in my heart that I’m doing what is best for the safety, welfare, and dignity of a woman who has selflessly shared so much with her children.

I know, even though she may not remember, I’m doing what she requested. And though he’s gone, I know my dad would be proud of me for giving selflessly of myself as they did for us.

So on this very special day, I honor my SO, Two Feather, for all the love, compassion, patience, and selflessness he has shown Mom and me and the two elderly neighbors on the road to my mom’s house. He is truly a blessing to us all and it is with utmost respect and love I say “thank you” for everything you’ve done, said, and kept to yourself, during this difficult time we share.

I cherish each moment I get to spend with you and pray we have many more moments and years together. I love you, Two. Thank you for being you, and for being there for me. Happy Valentine’s Day!