Alzheimer

Dementia Diaries: A Journey With Dementia: The Last Week

I remember a conversation my dad and I had a few months ago. Somehow we got onto the subject of when that time would come that Mom would pass away; I don’t know how it came up, but when we were talking about people coming to the funeral, dad said “There won’t be a lot of people there, nobody’s gonna come.”

I felt sad that my dad felt this way. I don’t think he said it because Mom was never loved. I think he said it because he felt like she was forgotten. Dementia can be a very lonely road. The very sad truth is that a lot of people stop calling and visiting once a person is diagnosed with this disease. I think there are many reasons for it. Sometimes people just don’t know what to say or how to act. Maybe they didn’t know if visiting was appropriate. Maybe they thought there was no sense in visiting someone who couldn’t remember them. Maybe they just wanted to remember her the way she was. It’s also a very long, drawn out disease and for everyone who is not living it everyday, life goes on. Everyone has their own hardships that they are dealing with and we each have our own lives and families to focus on. Whatever the case may be, it is still hard for the people who are here with her, living this disease and mourning the loss day in and day out. There are many times of loneliness and wondering if people care. I’m not writing any of this to shame or guilt anyone; I don’t want anyone reading it to feel that way. Grief is a very personal thing.

During the last week of Mom’s life, we let friends and family members know of the situation and opened the door for anyone to come visit. I think that Dad was very surprised by the response that we received. Mom always had a steady flow of visitors; there was always someone by her side. I can say for myself, that these visits are what got us through what was one of the hardest weeks of our lives. We felt so much love for us and for my mom. Tears were shed but sweet memories were also shared and beautiful moments were witnessed. We had people show up who have been here regularly, who haven’t been here regularly; some came from out of town. My dad asked me to take pictures of every person who came to visit Mom, so I’m sharing them on this post.

One of Mom’s dearest friends from high school, Cheryl, came down almost as soon as she heard the news. Cheryl has kept in touch over the years and has been calling to check in on Mom. She has been such a concerned and loving friend. She lives in Northern California and as soon as I made the call to her that Mom had taken a turn, she made arrangements to make a visit. She had no vacation time left, but that didn’t stop her. She spent all afternoon on Saturday driving down, arriving to her mother’s house late in the evening. She spent all morning until late afternoon on Sunday with Mom before turning back around and driving back home. Fortunately for Cheryl, Mom was still awake and even walking around (this was one week before she passed). She was able to sit with her, talk to her and love on her. A very sweet thing happened when Cheryl was there. She was sitting by Mom’s bedside as Mom napped and her hand came out from under the covers. She grabbed Cheryl’s hand and very slowly brought it back under the covers, holding tight and snuggling it against her heart. (This happened with some other people over the next few days, but Cheryl was the first). This is just my own personal belief, but I believe that in that last week of her life, Mom was aware of who was with her. I think her spirit knew each person that was there and although unable to communicate it verbally, she communicated it through touch. How grateful I am that her dear friend made that last visit to her. (Cheryl doesn’t like her pictures online, but she approved this older photo of them together, taken the year Mom was diagnosed, 2012).

Every one of Mom’s caregivers paid her a visit-both past and present. By Monday, we had relieved all caregivers of their duty. Yet, they still came to visit and one came almost every single day, staying throughout most of the day and continuing to care for her throughout the process. Some of her volunteer caregivers (who were “relieved” over a year ago, when Mom was transitioned into diapers) also came to visit. They all formed very sweet relationships with Mom throughout their time of caring for her and they grew to love Mom very much. (I don’t know what happened to the picture of her caregiver, Linda, but she was there too. Maybe we forgot to get a picture?)

Every one of Mom’s siblings came to visit her as well. The local siblings came a few times. Her brother, Jeff, flew in from Pennsylvania Thursday afternoon. We weren’t sure if he was going to make it in time, but Mom held on for him.

Some of her siblings-in-law came also. My Aunt Peggy (dad’s sister) flew in on Friday and my Aunt Sharon (another of dad’s sisters) was with us the whole week. Uncle Tim, (Aunt Sharon’s husband) was also there with us a lot. Aunt Sharon actually spent a few nights with us; she was by our side almost the entire week and I will forever be thankful for that. She is also an RN, so it was very comforting to have her there. It was comforting to have all of our family there! A couple of my cousins also came to say good-bye.

Of course all of her grandkids were with her all week. My daughter, Maurina, flew in from Colorado on Wednesday. Most of the time, they all slept over; they didn’t want to leave grandma. I think they found comfort in being together. There were many tears shed but also sweet moments as they cuddled with grandma, rubbed her back and arms and gave her kisses. Hard as it was, I’m glad that they were able to be with her and I know they wouldn’t have wanted it any other way. I’m sure Mom was comforted to have her sweet grandbabies by her side.

So many other friends and neighbors came to visit. I don’t think they’ll ever know how much that meant to us! I really do believe that Mom knew they were all there. We joked that that was probably the reason why she took so long to leave (she lasted 2-3 days longer than the nurse Tuesday night thought she would); she was enjoying being loved on by so many. There are a couple of friends that I forgot to get a photo of and I’ve been kicking myself ever since. One was her dear friend, Janna Marcroft, whom she’s known for over 30 years! (Sorry we missed your picture Janna!!) We also missed our family friend, Carl Harris, who came to visit and left us with prayers that we greatly needed. Hopefully that’s all I’m missing (and Linda). So sorry! I was so thankful for Danielle (caregiver) and for my Aunt Peggy, who took over with the picture taking. I was so emotional at times that I kind of forgot.

Of course her children and husband were by her side. On one day (I can’t remember if it was Wednesday or Thursday), we had a little beauty day. I was finally able to groom her toenails and I painted them cute for her. I groomed her fingernails as well and Danielle painted them. We put a little make-up on her (just some eyebrows, eyeshadow and lipstick) because we all know that Mom would’ve wanted to look her best for her vistors. Here are a few pictures I wanted to include.

Dad got in the pedicure spirit and my sister-in-law, Natalie, painted his toenails! Ha ha. It helped to lighten the mood.

I know there were many others who would’ve loved to come visit but were unable to. We have felt everyone’s love through the dozens of cards, flowers, foundation donations, gifts, meals, attendance at her funeral, etc. When Mom’s time did come, people were there to love on her. Her funeral was packed; I didn’t see any empty seats in the chapel. Friends and family members traveled from far just to be there; people we didn’t even give thought to coming! It was a testament to me of the many people who do love and care about her and the rest of our family as well. Thank you to every single one of you who have been here for us through this difficult time.


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