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!