Missing Mom

I miss my Mom...

1. I miss talking to her. She loved talking on the phone and was really good at calling all of us and staying in touch.

2. I miss shopping with her. She loved to shop. She had tons of energy and could shop till I dropped. She was my best shopping buddy.

3. I miss her visits. Mom and Dad travelled to our home on a regular basis, sharing most holidays. There is a void at family gatherings.

4. I miss her advice, especially on kid stuff. I would love her opinion and input.

5. I miss her  touch. She doesn't usually hug back anymore.

6. I miss her voice. She doesn't talk much anymore. She used to repeat I love you, when I said it but not anymore.

7. I miss the way she used to gather us. Now we are on our own. She was really  good at keeping everyone connected with each other. I haven't talked with my aunts in a really long time. I am going to try harder.

8. I miss her gift of giving. I find my self buying things for my grandkids because it looks like something she would buy for them.

9. I miss how she took care of dad. He is doing fanstatic, but her input is missing.

10. I miss her love and the way she made me feel. I know she loves me but this disease doesn't allow her to show it much. However, at Christmas she gave us kisses and a wave, which was so sweet. It was the highlight of our visit.

11. I miss watching her love on my kids and grandkids.

12. I miss her encouragement when I'm sick or down or discouraged.

I have had a wonderful life with a wonderful loving mother. If your mama is alive, cherish every moment.  Give her the gift of spending time together.  Hug her and tell her you love her!

A pearl necklace and the tomorrows

A Pearl Necklace and the Tomorrows…..

Written by Amy Millar

On the eve of my cousins wedding, I am busily packing things for our family to make the journey out to Lancaster to honor her and her groom and gather as a family. The final item I will pack is my most precious belonging in the entire world.  Anyone who knows me knows I have had life experiences that have taught me to value resilience, love, honor, family and time spent with loved ones over worldly possessions.  But there is one possession that simply breaks the rules of my mantra; I am a rule breaker by nature so it’s only fitting I break my own rule. The origin of that item is more valuable than I can put into words. It is special, plain and simple but brilliant.  It is my pearl necklace.  It is my legacy from my grandmother. And so it is only fitting that something so special be a part of tomorrow’s festivities as we celebrate Kris and Tyler and their union as a family.

Weddings are special too… a time to honor love, hope and God, while the whole family is gathered in one place. They only happen every so often in a family - and it will be so great to be with everyone tomorrow - but there will be one person not there with us. There will be an empty seat next to my grandfather, a quiet, empty place that we will each take time to honor in our own way tomorrow.

We will be missing our matriarch (although if she still were able to speak she would say oh hush that’s not me). While we will all make the journey to Lancaster, she will be alone in her nursing home far away from all of us as we celebrate these two lives joining as one tomorrow.  And I know in my heart that while it saddens us all, if there was a way for her to be there and be present, our family would have moved mountains to make that happen, but the truth is in her state and condition it would be selfish: an act driven just for us, not for her. To transport her all that way, to be surround by the strangers we have now become to her because of Alzheimer’s, would be cruel and demeaning and probably leave her feeling more lost and afraid. And the Nana we knew and loved would never want all that fussing over her on such a special day.  She no longer is who she was. She wouldn’t want to burden anyone just to have her body there. Her spirit will be there regardless and we have to take comfort in that. That amazing woman will not be with us tomorrow but we will honor her in many ways as we reflect on the woman that brought a 10 lb baby home from the hospital on a 10 oz bottle who slept for 10 hours (a story we all know well from the early days of her battle with Alzheimer’s as it was a loop we would get so annoyed at… yet today I think we all would pay a million dollars to hear her tell it just one more time), who raised 5 kids, who loved and adored all of her grandchildren and great-grandchildren, who had a heart for those who did life differently and honored them by being a pioneer for special education which now, as a mom myself raising kids who do life differently, she will never know the impact she made in me to love them beyond their struggles and disabilities and to fight for them, especially for their education. She was a pillar of her church, community and our family; brilliant, caring, and loving; her skin always ever-so-soft, her voice raised only to call for my grandfather: Bob…. BOB! She is the one who gave my cousins Kris, Beth and me our most prized possessions, our pearl necklaces.

She gave us a gift unmatched by any other gift.  And it wasn’t given to us as a whole necklace; she gave each of us, her granddaughters, a pearl at a time. A lesson taught in patience and appreciation given out of love to each of us.  When I was young I didn’t always understand this gift, I often was disappointed on Christmas and my birthday when I would receive another one of those tiny navy blue boxes with gold script writing holding a neatly and gently wrapped pearl inside. A half hearted thank you would forcibly come out of my mouth as my mother would give me that look that moms give to a child, who has opened a gift that they didn't seem thrilled about, that says you better say thank you right NOW and I mean now and look like you mean it! In time, I realized how precious this gift was and my spirit was blessed with each new box. These simple pearls were brilliant and precious.   Each pearl given represented an event and a moment in my life that we shared together.  My birth, each birthday, all the firsts, when I accepted Christ as my savior, when I was baptized, when we shared holidays together, some just because I was her granddaughter and she wanted to represent those moments shared with me in a way that at the time I didn’t always appreciate, I had to grow to understand its significance, its power, the continual gift it would become to me for the rest of my life. As my life grew and our journey as grandmother and granddaughter changed and was shaped together, so was a necklace strung from all those loose pearls. Along the way I had a strand necklace that was not quite finished. She would always say the empty spaces on the strands of the necklace were for all the tomorrows ahead, the tomorrows that would fill my life.  She did this for all three of us and they each represented three very different young women who are simple and extraordinary in their own way and were so precious to our Nana who strung us together as a family by her incredible love.

For my necklace, the final pearls were strung in honor of my marriage to my husband 11 years ago. She didn’t know when she had carefully selected those first few pearls what would become of them and the girls they represented.  I know now that she sacrificed for those pearls; she saved and fought for those pearls; she believed they mattered the way she fought for and believed in us and showed us every day that we mattered. She could have chosen to give each of us a completed necklace, it would still have been special to us but the careful, purposeful way she gave this gift was more symbolic than I can express and more powerful than anyone will ever understand how each pearl came together just as our lives did because of her love, perseverance and faith. And so, on my wedding day I wore my finished pearl necklace for the very first time and as the doors opened I took a breath in and felt their presence resting ever so gently on my chest, the way my head used to rest on her chest as a child, as I walked towards my groom I brought my whole life to him in each of those simple, yet brilliant pearls with each simple yet brilliant moment in my life, I brought them all forward. I remember seeing her sitting next to my grandfather in the pew proudly as I walked past. Our eyes locked as we shared a moment. She smiled at me in adoration not of a necklace… but of me, of what I had become because of each of those moments it represented.   It was a moment in my life I will treasure always.

There will come a tomorrow when my daughters will one day wear my necklace and I will share with them all the significance of a simple yet brilliant pearl necklace.  There is a special bond between grandmothers and granddaughters and there will be many tomorrows I wish with all that is within me she could share with us but in my heart I know she will always be with us because of all the love she strung in us.   That brings me peace among the ever growing ache for her presence in my tomorrows.  In that peace I know that there will be a tomorrow one day that will come when I will be honored to wrap a tiny, navy blue box with gold script writing on it with a simple yet extraordinary pearl nested sweetly with all my love for the birth of my first granddaughter. In that moment I believe will be a forever pivotal space in time that my Nana will get to share in for generations to come all because she loved her simple yet extraordinary granddaughters in a simple yet extraordinary way.

And so tomorrow Kris as a beautiful new bride will wear her pearls too, and she will bring with her all of who she has become through her simple yet brilliant moments of her life to her groom Tyler. And when the doors open and she makes her way towards her groom there will be a moment when she looks over at my grandfather who will be beaming with joy and pride… there will be a space, a felt emptiness beside him. My prayer is that as she takes in that bittersweet moment and locks eyes with our proud grandfather that she feels her breath and the unfinished pearl necklace that sits ever so gently on her chest that she is reminded of how it felt to lay her head on Nana’s chest all those years ago and know that that empty space beside Papa is not empty at all... it is over flowingly filled with all of Nana’s love, joy and pride for her precious granddaughter just as it was at my wedding and just as it will be at Beth’s one day. And while for Kris, the youngest granddaughter who Nana didn’t get the chance to finish her necklace like she did for me and for Beth, hers will tell the tale that just like its unfinished strands, Kris’ story isn’t complete and neither is our Nana’s and it’s still full of tomorrows. Kris will not just bring all who she has become but she will also bring all her unfinished tomorrows to her groom.  And that is a gift in-and-of itself that I am so grateful for Kris to have because unlike Beth and me, she was robbed of knowing Nana beyond those early years the way we got to. She doesn’t remember who Nana used to be; she only knows the nana that has been taken little-by-little by a relentless disease. But yet what grace is strung in that necklace that forever will hold her tomorrow wishes from her nana who loved each of us so very much. A silver lining of both sorrow and blessing in it being unfinished with emptiness and yet full of what may come all in the same. Her necklace is waiting for all the tomorrow moments ahead of her and while Nana won’t be able to share in them physically, she will always be a part of them in spirit. Kris may choose to leave the remaining strands empty - continuing to represent those tomorrows - or she may decide to add a pearl for their first home, their first Christmas, their first child: inviting our nana into those moments through a small navy blue box with gold script writing with a carefully placed pearl inside.  But in the end no matter the number of pearls on that necklace, it will always hold Nana’s love for her, how proud of her she is, all that Kris and Nana have become and all their tomorrows.

Tomorrow I will have a special moment amongst all the joy and celebration, great food and even greater company, I am not sure when it will come and it may not be a spoken one. It may be one felt simply through the sight of a flickering candle as I touch my pearls, or the sweet aroma of the purple flowers (her favorite color), or in the simple elegance that will be all around us in a quaint quiet town that Nana always loved… but it will be one that I know Kris, Beth and I will share together in tomorrow’s tomorrow that we are blessed to have been strung together with the love, patience, and kindness of a woman who is never as far away from us than our hearts that beat below our most precious gift, our Nana’s pearl necklaces.

          

So here is to the tomorrows ahead of a bride and groom and each of us and to our sweet Nana, who strung us all together as an ever-growing simple yet extraordinary family like those precious pearls in faith, love and hope; who instilled in us to love one another, to follow Christ and to treasure today and honor what a gift a tomorrow is….

a day of awesome gifts...

I received some awesome gifts today, priceless gifts, 10 minutes with my mom in which she was awake, alert and responsive. She smiled at ME!, embraced me, patted my back, looked into my eyes, nodding yes appropriately in response to questions. She even watched a video of her great-grand baby Alice.
 I left early this am for CT with my Dad after an early Thanksgiving with our family in PA. I didn't have a lot of time for a visit because I wanted to get back on the road to get home. It's about an 8 hour round trip drive. Mom was sleeping in her wheelchair at the table when we arrived. It was obvious she had slept through lunch. We couldn't wake her, even after we took her back to her room. We tried; we put Christmas music on and decorated her little tree. She slept on. She never opened her eyes. Finally I knelt beside her wheelchair and told her I was leaving. I placed her arm around me as I hugged her and started to cry. And then my Dad said she opened one eye and then she started to pat my back. Then she woke up and we had a precious ten minutes before I left. What an awesome experience. And on the way home                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    God gave me this sunset..... Cool

Every good and precious gift is from above; it comes down from the Father of all light... James 1:17

Including Mom

sisters/sisters

Mom remains a part of our lives. Recently, we had a bridal shower for the youngest grandchild. 

Although Mom didn't make it to the shower, she had lots of visitors over the weekend

Mom was missed. Even though she wasn't at the shower, she had an impact.  Our memories of her made it feel like she was a part of the day. It was cool to see the way her influence and impact on each of us was reflected when we gathered. I am sure people experience this when their loved one is gone. At the shower, cookies were made by my sister-in-law that Mom used to make. She made them exactly the way Mom did, which is a bit quirky.  And they were so yummy. And then there was the pearl necklace that was started when Kris was a little girl by Mom (Nana) and although it's not finished, it is still special and cherished. Papa added some pearls for the shower. It may not be completed by Mom but in her memory, representing parts of Kris's life. Perhaps what the unfinished necklace represents the most: that Nana will be missing at the wedding and has been missing in Kris's adult life (see Kris's prior post).  Amy (first grandchild) shared about her pearl necklace and what it meant to her & Nana. Everyone teared up. Mom loved celebrations like this. She organized many and blessed many by her gift of hospitality. Mom you are loved and you are missed. 

Unrealistic expectations...

Unrealistic expectations and denial are obstacles in helping someone with Alzheimer's.

One Christmas I decided that I would set aside a week to take my parents to Florida. They had gone several times a few years back and had talked about going again but it never materialized. They had many friends there. I gave them this gift at Christmas. Their response was surprising. My mom didn't understand why I would want to go with them. They didn't need me and when they went they wanted to go for 3 weeks not just one week. I had hoped to take them while they could still travel but they said no and they didn't go on their own either.

Florida

 Later that year my husband and I offered to take them to Nova Scotia, Canada, My mom's parents were from there. My mom had talked about taking us girls there for decades. We had gone as children. My mom had stayed in touch with cousins. We thought they would love to go but they said no, because they wanted to go to Colorado to help her sister with her grandchildren. While well intentioned, it was unrealistic that they/she could help.  I actually tried to set up a trip, in which I could take them for a visit, and my aunt said please don't come. She was too overwhelmed to have a visit at that time. My husband and I went to Nova Scotia and Cape Breton Island by ourselves. We met up with some cousins, which made Mom happy. It was hard to understand why they wouldn't let me help but looking back I think there was comfort in staying in their routine and familiar environment/home and some fear in traveling. She was still very much in denial. It's unfortuate as we could have had some really nice trips together.

Cabot Trail, Cape Breton Island

I drafted this post awhile ago. Reflecting back now, I realize that when my parents first wanted to travel with us, my life was so busy, I couldn't find the time. Now that our kids are grown, unfortunately it's too late. I regret not making more time for them. I wish I had realized how important it is to capture the moment and spend all the time you can together, when you can.

Longevity

Writing this blog gets to me sometimes, mostly its therapeutic but sometimes it's just emotionally too hard. After a long break, I am back at it, here's one from February I never got around to posting.

February was a big birthday month. We had the privilege of having both my dad and father in law visit for their birthdays. We gathered the kids and grand kids and made lots of their favorite foods.

two men, two birthdays...

94 years old

My Father in law turned 94 on February 13, 2013. He's a good guy. We celebrated with omelets. sticky  buns and a birthday dinner of Scottish meat pie. My husband flew with him to Florida where he'll spend three months with my brother in law. Dad lives alone and has stopped driving. His son in law is his main caretaker. Richard drives him to appointments and grocery shopping and checks on him daily. His hearing isn't so good. His hearing aides work ok. He makes odd sounds, one in which we call his hootie owl sound. He has a good sense of humor.  He is able to still take care of his own medications. His mind is good. He's lonely and misses his wife, Mary, very much.

90 years old

My Dad turned 90 on February17th. We had a party with all my siblings. We brought him clam chowder all the way from Maine. I was able to then bring him to our house for a few days. He requested blueberry pancakes and roast beef with potatoes and carrots for his birthday dinners. He is in good health. He doesn't hear well either and his hearing aides don't work very well. One is usually lost or broken. His mind is pretty good. He is an avid reader and reads at least one book a week. My dad visits my mom (who has Alzheimer's disease) twice a day. He eats dinner with a group of men that also live at the progressive care facility where he lives. He wants to live to 100.


And this is our cat, the equivelent of 90 years old. I think he might live to 100 too!

So there you have it, longevity turns out different for everyone. Some go to bed praying they won't wake up, others want to live to be 100 and some just keep plugging along. 

When doctors are cowards...

Some doctors are cowards. Those are strong words that come out of significant frustration.

For several years before she had a diagnosis of Alzheimer’s, our family knew something was wrong with Mom. With her in denial, it took a lot to get her to talk to her physician about our concerns. It took even more convincing for her to keep the appointment with the neurologist. So when we finally did get her to ask and then go, we had an expectation that we would have some support, but that was not our experience. I know that there are some awesome docs out there. I am a nurse and I see and work with some fantastic practitioners, but our experience with our mom and her Alzheimer's and getting help and support was not a good one.

Our mother's doctor, whom she had seen for 25+ years, told her for years that what she was experiencing was simply age-related and to tell her children not to worry, that our concerns were unfounded. Even when we approached with concerns about her driving, He said, “If they can see and they can walk, then they can drive.” We were on our own in keeping Mom and Dad safe. We got to the point where we were concerned that my mom could have an accident and kill someone. It made it much more difficult that her doctor did not support us when it became time to take her keys away. This was a difficult time for our family, and although my mom's doctor did not seem to agree with our concerns, he did fill out forms which my mom had given him for getting a test through the state’s motor vehicle department. Three months after we took the keys away she got a letter asking her to surrender her driver’s license. By that time, family healing had started and this just brought back anger and paranoia that we had her driver’s license revoked when it was her doctor who filled out and sent in the forms that she had given him. Even though she was no longer driving, having to relinquish her driver’s license was another blow that she blamed on us. 

When we finally got Mom to agree to see a neurologist, she cancelled appointments on us to the point that we had to tell the doctor's office to not let her reschedule or cancel again. We sometimes waited months for these appointments. We were only able to say this because my brother had Power of Attorney. My parents also had previously included us on their HIPPA forms. We have each fallen into different roles. Shortly after this, I was named by my parents to be their healthcare proxy. All the siblings agreed that someone needed to accompany Mom to her appointments. Although she didn't like it, it was important that she have someone with her when meeting with her doctors. At this point Mom was often very confused. She could no longer fill out forms and Dad was often unable to give accurate information. My sister was helpful in this area and she and Mom made a deal that she would help with forms and go to the appointments but each would have time alone with the doctor. There were some appointments when both parents and my siblings attended. 

When the neurologist was discussing the results of our mother's evaluation with my sister, she questioned why, if it was, in fact, Alzheimer's disease, didn't the doctor use those words with our mother? The doctor replied, "I don't use the word 'Alzheimer's' with my patients because it is very upsetting.” So there we were with a mother who continued to be in denial and the only ones telling her something was wrong was her family. It was so hard to help Mom as she was so angry with us. When she got results of a scan that showed spots on her brain indicating plaques I called them, "Lynda and Robin spots," because she believed we were the ones causing the stress that led her to forget. 

I just wish that while she still could have understood – however upsetting it would have been – that her doctor or some professional outside the family would have had the guts to tell her what she was dealing with. I think she could have come to terms with it better and it could have avoided her anger towards the ones that love and care for her so much. It would have been better for her doctors to talk frankly and explain her Alzheimer’s diagnosis.

Once our parents moved to a progressive care retirement community, we found a fantastic nurse practitioner specializing in geriatrics that has been tremendously helpful with Mom, Dad and the family. She was able to handle difficult situations with honesty and compassion, giving practical guidance each step of the way. Unfortunately, once Mom was placed in the nursing home her care was transferred to another doctor in the practice. This was difficult as we don't know him and he doesn't know Mom. He has appointments with her without any family knowledge or involvement. The nurse practitioner continued to treat my dad until she moved away. Once you experience this level of excellent care, it makes you want to seek that level out; it's there, it's just been very hard for us to find. Perseverance can be exhausting.

If you find yourself in a similar situation, consider finding another physician, especially one who specializes in geriatrics. Many larger hospitals have geriatric assessment programs that evaluate the patient completely using several practitioners. Here is a sample of one such program:  http://www.amh.org/services/senior-health/geriatric-assessments/. It's important to maintain trust, because as the disease progresses trust is challenged. As seniors age it's helpful to bring a family member to appointments, and add them to HIPPA forms. Discussions about Power of Attorney, Healthcare Proxy and Advance Directives should take place sooner rather than later.

  

Purple

There seems to be purple everywhere these days... 

I bought a purple scarf today, because purple is my mother's favorite color. There was a time when she might have argued that it's lavender but to me its purple. She likes purple flowers, she has a favorite purple suit, she painted her bedroom purple. They have purple towels and purple rugs in the bathroom. You get the idea. I have never been fond of purple. The only thing I ever remember owning is a long plaid wool coat with a velvet purple collar. My mom liked that coat. 

It's kind of cool that the color that represents Alzheimer's disease is purple. Now that I can't communicate very well with mom with words, I try to communicate with her with color. I bring her favorite color to her, in blankets, clothes, in flowers, balloons, decorations on cupcakes etc. In the last few months, I have found myself buying items that are purple. At first, it was so I had something to wear on Alzheimer Awareness Day, but now I wear purple to my visits. It's a way to remember Mom's preferences and honor her. It's funny that I now like purple if only because my mom does. I am finding the color comforting.  I'm looking forward to wearing my purple scarf to my Christmas visit with my mom.

Christmas visit 2012

Holidays

The day after Thanksgiving 2011

Holidays are a wonderful time of year when we get to gather the family. I don't live close to family, so I really look forward to these special times.  My parents and my family have made too many trips to count spending time together at the holidays.  When Mom got to the point that she couldn't travel anymore, it was hard to not have them with us. So we started a new routine/tradition; siblings would celebrate separately and then gather the day after at my parents. This left my parents alone but together.  Last year my dad called and asked, "What are we doing for Thanksgiving?" He really wanted to spend it with us.  Since it was my year to work (duties of a nurse- Thanksgiving was going to be crazy) I said that we would come the day after. I knew he was disappointed to miss the big gathering. I felt like it was important for him to stay and be with Mom. We could have gotten him for several days to visit but it didn't feel right for Mom to be alone on a holiday. We did this at Christmas too, gathering the day after. There have been times throughout the year that we go and get Dad and bring him to our home for several days to a week. My concern was that if he left Mom for long, when he returned she wouldn't know him anymore. We know that this could happen at anytime. But so far, each time, she lights up when he returns. It seems she has no concept of time so we think she doesn't miss him when he's gone. She doesn't know what holidays are anymore. Each day runs into the next and is pretty much the same. 
This year Dad is celebrating Thanksgiving at my house. My sister and her family are coming. Ours kids and grandkids will be here. There will be crowds and chaos and Dad will love it.  
Mom will be alone for Thanksgiving and, although hard, we have let go of the need for Dad to stay with her on holidays . As a caregiver, Dad needs to have a break and live life and enjoy holidays sometimes just like they used to. So I'll drive up on Tuesday. I'll spend some time with Mom, get in a few hugs and bring Dad home with me. My sister will take him back on Sunday. It will be good to have him here.  We'll miss Mom but know she is well cared for and her smile will be waiting for Dad when he gets back. Here's to being thankful for all that God has given us!

Thanksgiving 2012, sending love to Kris in New Zealand

A job well done

This post was written by my sister

I am a fourth generation teacher. My great-grandmother was a teacher, my grandfather was a teacher, both of my parents were teachers. It is a rich educational heritage. Last Saturday evening my parents were honored and recognized for their career commitment to special education by the alumni association of their college. My dad taught for 38 years. My memories of his teaching career are mostly from the time he taught in the city of Hartford. He taught in a school that housed special needs students. He taught young men life skills and they taught him about survival in the city. My mom taught preschoolers. She had a reputation for working miracles with difficult children and their parents. I wonder how many children are successful today because she saw the potential in them when no one else could? She taught for over 20 years, giving structure, hope and love to the children in her classroom. She became a sought-after consultant by many in the field of early childhood education.

They touched the lives of so many families as they were involved with parent organizations, church activities, and mission trips all revolving around special education. They invested themselves professionally and personally in the lives of others: loving them, encouraging them and meeting physical needs.

My sister, my daughter and I  accompanied my dad to the banquet where Mom and Dad were honored, receiving recognition for their commitment to special education throughout their careers. My dad accepted the award on behalf of both of them to a standing ovation and some teary eyes. We wished my mom had been able to be a part of the evening. It was bittersweet, yet doesn't diminish the impact they have had on others.

Here's to you Mom and Dad! A job well done. Congratulations!

Guidelines for visiting the nursing home

Guidelines for visiting my mom... and/or visiting anyone in a Nursing Home

Visiting a nursing home can be both difficult and sad. When my mom was younger, she was really good at it. She knew what to say and what to do. Not everybody does. Visiting pushes many people out of their comfort zone. I'm hoping this list might relieve some anxiety:

1. Take the children; the residents love seeing children, as they are noticeably lacking in a nursing home setting. When we were kids, Mom often took us to visit nursing homes. It's a good thing she didn't let me sing, but my siblings did a fine job. So take the kids, but remove unruly or screaming children ASAP.
2. Animals. Check with the administration, but usually many kinds of pets are allowed to visit. Mom loves seeing dogs. We don't have a dog but there are residents in the independent area that visit regularly with theirs. If we see a dog making the rounds, we make sure Mom gets time to pet it and see it for a few minutes.
3. Smile.
4. Interact with others. You have no idea how long it may have been since someone said hello.
5. Bring flowers; family members should provide a vase that stays there.  We try to keep fresh flowers in Mom’s room.  Water plants or change water in the vase as needed. Throw away dead or wilted flowers, and rinse the vase.
6. Give your loved one a drink. Of course, you need to know about any restrictions on food or drink as some older people have restrictions and/or have trouble swallowing. When in doubt, ask first.  My mom is often thirsty but she can't/doesn't make her needs known. We have been told that she doesn't drink enough. Her labs confirm this. Instead of asking Mom if she wants a drink (she'll often say no or doesn't respond), I get her a drink with a straw and place it at her mouth. Since I have been doing this, the response is great. She'll smile, lick her lips and gesture for more. She takes in several small cups over the course of a visit.
7. After making sure the person is not on restrictions or a special diet, give them something to eat. The home where my mom is living has cookies or a snack for the residents in the afternoon but they have to come to the common area in order to get it. They use this practice to entice them out of their rooms. While well intentioned, this didn't work with my mother. They now have snack carts for family members to get snacks for their loved ones. While providing a snack for my mom, on this past visit I got a drink and snack for her roommate. It was the first time she talked and interacted with us.
8. Read something. The family should have some things available: a Bible, devotional book, a children's Bible story book, a favorite children’s book. Recently we left an old “Child's First Bible” in the room. The stories are about a minute long. My mom taught Sunday School, Children's Church and Kids for Missions until she was 81. She had a fantastic career as a diagnostic preschool teacher. One of her favorite books was Brown Bear, Brown Bear. Her great granddaughter read it to her on her last visit. We also have a photo album that is labeled with all her family's names.
9. Make them comfortable. Sometimes we find Mom’s room is too cold or too warm.  Let staff know if you change the temperature. Knowing a person's preferences is helpful. Share these with the staff. A simple thing like closing the blinds on a bright sunny day can be welcomed. Mom can't asked someone to do this and she can't do it herself so we have found her under her covers on a sunny day.
10. Make effort to interact with staff.
11. Visit in lounge or garden with children. Give them a change of scenery if possible.
12. Touch them. Hold their hand, hug them. Mom loves a good hug.
13. Don't feel like you need to stay too long.
14. Tell them you love them.

15. Try not to cry but if you do, it's OK.
16. Come again soon. 
17. Know that the families of every patient appreciate all you do.

Living with Alzheimer's vs Dying of Alzheimer's

There are many forms of dementia; not all are considered Alzheimer's Disease. Yet Alzheimer's manifests differently in different people. My father's sister has the disease, and we would describe her as living with Alzheimer's. She is stable, happy, compliant and is able, with dedicated, amazing caregivers, to continue to live alone independently. Her short term memory is almost non- existent, but in the moment she is there. She has a great sense of humor and is quite aware that she forgets. She likely won't remember our visits but, again, does very well in the moment. She can retrieve who we are and engage in spontaneous conversation. After a few minutes though, she will forget and repeat the question or statement. She has been in this mode for about eight years.

This summer we took Dad to Maine to see his sister. It was a gift from God, as it was the best visit that we had with her in about six years. She repeated herself only once. She is so pleasant and funny. She was able to start numerous sponstaneous conversations with her brother and her nieces. She asked appropriate questions about other family members. It was a wonderful day.

My mother's disease, however, progressed much more rapidly and she is now in a nursing home. Eight years ago she didn't have any symptoms at all.  We noticed the first symptoms about 5 1/2 years ago, and she has only had the official diagnosis for about three years. Now she only knows our dad. She speaks very little, no longer walks and now has to be put in a lift for transfers. She spends most of her time in bed. When describing our mom, it seems sadly that she is no longer living with Alzheimer's, but dying of it.

Dad with his sister

Lost and Found

Mom pushing her great granddaughter in her walker. 7/09

Mom being pushed in her wheelchair by her great granddaughters. 7/11

At some point most people with Alzheimer's Disease have problems with wandering or getting lost. Unfortunately, it can end badly. However, some of these stories, however troubling, are a bit amusing. They can be the red flags that signal a new look at keeping the person safe.  There was a time when my mother was able to follow a routine. On Friday mornings at 9:30, my father would go to the store to grocery shop or do errands. At 10:00, my mother would walk to get her hair done.

As her memory issues progressed and physically had more trouble, she needed a prompt to go at the right time and the assistance of an escort. She moved from walking, to the use of a walker, to use of a wheelchair. She got scolded several times for sitting in her walker and scooting along.  She had trouble remembering not to sit and scoot, so someone decided to take the seat off. But then she would forget and sit in it anyway. This was not a good thing.  In order for dad to continue his routine we hired an escort for mom. The aide would make sure mom safely got to her appointment on time. My father would pick her up after her appointment and walk with her back to the apartment.

Then on one day my father returned from the store to learn that mom was missing. When the aide went to get her, she was not in the apartment. She must have remembered to go to the hairdresser after my father left but had forgotten to wait for the escort. She never made it to the hairdresser. Eventually, a couple came home to their apartment to find my mother sitting in their living room and called the assisted living line. Mom was sitting on a couch in a stranger's apartment. She must have gotten lost,  got tired,  found an unlocked door,  went in and sat down. Once she was sitting on the couch, she couldn't get up. (She was at that time using a lift/recliner chair in their apt).  I'm not sure mom ever understood that she got lost. It didn't seem to upset her. It ended fine. Everyone made adjustments, including the couple who left their door unlocked.

It wasn't long after this that mom fell, broke her ankle and ended up in rehab and, ultimately, a permanent placement in the nursing home part of the complex. She has had an extremely hard time finding her room so she was often found in other people's bathrooms or beds - so much so they nicknamed her Goldilocks. It seems that after about a year this happens less frequently but there were months that went by that every time we came to visit mom, she was missing. This was a really upsetting phase but this, too, has seemed to pass. There was one evening when my dad came to visit and, not finding mom, they put out an alert for her. Security even went to dad's apartment to look for her in case she had made it up there. She was finally found in a staff bathroom. After that, she wore a sensor  for about six months. She doesn't try to escape as some do. She basically  has two thoughts:  "I want to lay down so my back feels better" or "I have to go to the bathroom". Now, we mostly find her sleeping in bed. Perhaps there will be GPS attachments for missing patients in the future.

Taking the keys away...

As my mother got older, she started to self-restrict her driving:
1. Drive only in good weather.
2. Drive only during daylight.
3. Stay close to home.

When we got to the point of no more long trips, which meant no more driving to my house 4+ hours away, my parents started to feel the restraint. My dad hadn't been driving for about five years when my mother stopped driving. He stopped driving because he kept getting lost. He got to the point that he couldn't find his way home. Before he stopped driving, he was the main driver. Taking on all the driving was a big challenge for Mom. She was comfortable as co- pilot. She was always good with directions so she would give Dad directions as he drove. Now she had to do it all, as Dad couldn't help with directions. Mom broke her ankle late in life which created lots of issues with her ankles so she was now wearing braces on both feet. My parents lived with my sister and near to my brother so they observed her driving and we tried to keep an eye on her driving ability.

It all started when my dad talked with my husband and really confessed that he had been keeping track of her driving mishaps, like hitting the curb, weaving, not staying in her lane, not stopping at a stop sign or stop light, close accidents. So, my husband talked to me and then, I talked with my dad, and then to my mom, and then to my siblings. We saw it coming and had done nothing. Now, it was time for Mom to stop driving but, "How do we do that?"

Of course, in front of my mom, my dad backed down and said she was a good driver. My mother was in complete denial. We asked her to talk to her doctor. He was no help, he told my sister that if they can see and walk then they can drive. He continually assured my mother that her memory issues were all age-related and that she was fine. No one wanted to take the keys away but my mother had no intention to stop driving. We decided to go through the Motor Vehicle Dept. We figured she couldn't pass the driving test so that would take care of it, but then what if she did? It was clear to me that in spite of possibly passing she was a hazard on the road and needed to stop driving. As it turned out, it takes months to set this up and there are forms to fill out by the doctor.  This was such a slow process that we acted before they did.

It took awhile before all the siblings were in agreement that this was the right decision. We happened to all be together planning my sister's wedding. The Alzheimer's was progressing, although no physician had actually said those words to Mom. She would make a decision and then change her mind, so less than two months from the wedding nothing had been finalized,  We got together and delegated everything. We tried very hard to honor her preferences. It was at this gathering, that we decided to take the keys away - together, as a family. We believed that my mother was a danger on the road, to herself, to her passengers, who by this time was only my father because no one else would drive with her. If she was with someone else who could drive, she didn't drive. She had the potential to have an accident in which someone could die, and this could affect another family, not just ours. We could no longer stand on the sidelines and let that happen. We had to stop it.

It was a God thing that we were all together. It felt like an intervention, and in some ways it was. Lots of tears by all, but we were able to communicate our concerns(again). She got upset and said, "So what do you want me to do?" and we answered with,"Stop driving and give Rick your keys".  She never drove again. It was really hard. She had a lot of anger towards me. Even though we all were there, it felt like she only saw me. It feels awful to have your mom angry with you. She stayed upset with me for a long time. It was a really difficult adjustment for my parents, one they struggled with and which precipitated their move to a progressive care retirement home.

It was clearly the right decision to take away the keys. We don't regret it but we do regret how hard it was on everyone. This situation above all others likely motivated me to write about living with Alzheimer's. I don't want my family to go through this. So when two people, my husband and/or two of my children decide the time is right, I will stop driving. This is for me. This is what I have decided. This is my guideline for when I will stop driving. This post is for me. This post if for my children.

About two years after this happened and with lots of open conversations with my father-in-law, at age 92, he decided on his own to stop driving. He knew the time was coming and he independently decided for himself that the time was right. That's the way to do it. He has adjusted very well and at age 93 continues to live in his own home. And I am so proud of him. I'm also thankful for the support of family around him who drive him to appointments and outings, making it possible for him to stay in his own home.