I woke up queasy and guilt-ridden. I was dreaming, or should I say having a nightmare. I dreamt I had forgotten to call or visit my dad in his care community for two weeks. I am not going to try to explain my dream because pieces of it still don’t make sense.
However, as I try to untangle my thoughts, I rationalize that Dad had been dead before Mom and in my dream, I had just lost my Mom. So how was I dealing with my grief over the loss of Mom so much so that I failed to contact and check in on my Dad? How did I exclude him from mom’s funeral?
I said I wasn’t going to try and explain, but then I just tried to explain …. sorry for the “mansplain”.
The aftereffects of caregiving and loss subside over time, but I’m still surprised by the depth and ferocity of the emotions that overwhelm me. I wonder if it’s seeing all the chocolate boxes for Valentines Day that has my parent’s on my mind. Mom used to love Russell Stover’s chocolates. Over time, she lost her love for them and moved onto See’s Peanut Brittle. She would eat it 24/7 and just the smell of it now makes me nauseous. Mom was always a picky eater and was losing weight she couldn’t afford. I was resigned to see her at least eat something she loved.
As I ignore Valentine’s Day believing telling your loved ones you love them should not happen one day a year … I will take some time today reflecting on how lucky I was to have my parents around until their 80’s. Calmed.
I was so happy when I woke up from a dream where mom didn’t have dementia. They started after mom died, and I hadn’t realized that for the last few years of mom’s life, she always had dementia in my dreams.
For the first time since mom passed away, I had a dream about her with dementia. Oh, it was awful and when it flooded back into my brain in the shower, I spent a few minutes crying it out. It’s been ten months since she passed. As sad as it was to absorb her death, I was also thankful.
Yes. I tell you that with some guilt. However, I know that my mom had hoped she wouldn’t have to live with dementia as she watched happen to her own mom. The odd thing was as my mom moved deeper and deeper into dementia, how hard she fought to live after each set-back. She never really bounced back and with each issue became more frail and in need of more care.
I’m perplexed by how we will get better at this as a society. The right to life movement doesn’t apply to people with dementia. It’s important to have those individuals who would step in to help you understand your wishes and beliefs completely because they will have to make choices you can never imagine nor can prior guidance cover. Statistically, 9 out of 10 of us will need someone to make choices about our last days on this earth.
I had choices to make and am thankful my siblings agreed with the final choices we needed to make on mom’s behalf. We knew she didn’t want to extend the qualify of life she was living so worked with the medical team to offer her a comfortable ending. I still carry some baggage and know much of it is still part of my grief.
I still miss her and I know that while the pain may subside, the loss will never truly heal. Changed.
My son got me hooked on “Game of Thrones” a few seasons ago. When he left for college, I realized I would no longer have a viewing buddy. My daughter quickly volunteered which meant there would be hours of TV getting her up to speed on the show.
During the 4th season, there are a few scenes in which people were dying and out of mercy, someone put a knife through their heart, or slit their throat. My daughter wondered why they would do this, it struck like violence, but in reality they were exhibiting mercy. It was the only way to help them avoid lingering in pain. As my daughter expresses dismay, we start to talk about it and I immediately recognize the complexity of mercy.
For anyone who has managed the hospice journey for a loved one, you understand the conviction it takes to be bedside and demand more comfort medicine.
You watch as your loved one’s body fights, even against what you know to be their end-of-life wishes.
I still feel conflicted about the last week of my mom’s life. She broke her hip and surgery was not an option; she had a stroke and no longer recognized me; she was unable to enjoy chocolate and would pack it in her cheeks; she was frightened and uncomfortable. We did what we could to bring peace. Now it’s time for me to find my own. Battled.
I feel guilty as we are rolling into Christmas. When my Mom suddenly failed last month and we were advised that we should move her into hospice, I was thinking this would be my first Christmas without a parent. I was both sad and relieved by that idea.
My Moms quality of life is beyond low. She seems constantly agitated and bewildered by the events around her. She still does not understand how she ended up in wheelchair. She never seems to be comfortable. She’s also entirely dependent on someone else to help her do everything, which she bristles about. All I can do is make sure she is as comfortable as we can make her and advocate for her wishes.
Because I didn’t think she would be here, I didn’t order the little Christmas tree for her room she treasured last year. I hurt walking down the hallway filled with wreaths to arrive at her empty door. I fixed that on my next visit and we made a new wreath in the shape of a star for her door together.
The holidays are always difficult. There are new places and faces and a lot of activity. You strive to uphold the cheer of the family gathering, but often find you are managing around embarrassing moments.
My one bit of advice is to simplify activities and enjoy the time and connections you can make with those you love the most. Consider writing them down. My guilt dissipates as I reread my posts knowing I’m doing the best I can. Wished.
Twice in the past week I have driven by a bakery that makes saltenas that I took my Dad to in the last month of his life. Right after I was told he had a tumor on his tongue, we had a variety of appointments to figure out what it was and how to treat it. One of the first appointments was a scan to identify the size of the tumor. As I was sitting at the office waiting for him to return with the medical assistant, I did a search on Yelp for a lunch place. The bakery had great reviews and I knew my Dad would enjoy something out of the routine.
I had hoped that the soft beef and potatoes would be easy for my Dad to eat, but he struggled through lunch. He continued to be his strong, stoic self and tried to enjoy the meal. I had no idea how sick he was but immediately recognized that it was just too painful for him to eat. I couldn’t believe I hadn’t recognized this earlier. Just like he hid his dementia, he did a good job of hiding the fact that he wasn’t really eating much anymore. I had noticed that he was losing weight and asked the doctors but they chalked it up to his disease state.
I was surprised the first time I drove by the bakery. I immediately recognized the area and the last time I’d been in this here. When I drove by it again today, tears started to form. I quickly remind myself that my Dad’s in a better place.
I miss his quiet calm and his good nature. I wonder if there will ever be a time when these memories don’t bring tears to my eyes. I’m not sure if that is a good thing. Missed.
Background: Last year at 5:45 pm on the Friday of Labor Day weekend, the nurse from the medical team at my parent’s retirement community called to tell me they found a tumor on my Dad’s tongue and he needed to get to an oral surgeon ASAP. Over the next weeks we worked to get a diagnosis and determine treatment options. We never made it through the gauntlet to get him into treatment and he died in a hospice facility four weeks later. While I feel regret that I couldn’t have caught this earlier, I had been trying to find out why my Dad was slurring for months and took him to an external doctor for a second opinion. I know that in some ways this was a blessing and he didn’t have to continue to live while the Alzheimer’s robbed him of his self. I’m still a bit conflicted over these events.
As you adjust to caring or just loving some one who has dementia, I hope you are finding rewards in the things you can still share and enjoy together. While I don’t want to focus on how long or short this phase of my Mom’s disease state will last, I am enjoying my visits and the small victories.
While we are still PJ challenged, the sunglasses Mom purchased are still in her possession. On our weekly grocery trip my Mom grabbed her sunglasses and put them on before we emerged into the bright sunny afternoon today.
My daughter was with me on this trip and I noticed that my Mom was having a harder time recalling both of our names. I’m used to being called “Kathy” which is my sisters name, but today, Mom had trouble just recalling my name when she tried to introduce me to one of the personal assistants who has been at her side for two months now.
I say hello and go along with the introduction, as does her personal assistant. We are getting comfortable with the new dynamics. When I arrive, I will typically find one of the assistants walking with my Mom. One of the two have been able to adapt to my Mom’s interests and has found ways to get her out of her apartment, if only to go get a cup of tea and sit in the community center and people watch.
I’m feeling much less guilty about not being able to visit Mom more now that I know she has two people who are there to join her for lunch and work to help her enjoy each day a little more than she would by herself. Temporarily Calmed.
When I arrive to visit my Mom, I ask her if she finished decorating her Christmas tree. She gives me a puzzled look and asks “What Christmas tree?”
On a recent visit, my son and I helped “put up” a baby potted Christmas tree for her apartment. We added a string of lights that are battery-operated and got out the “jingle bells” to hang on the tree. My Mom asked if she could finish decorating the tree, so we moved on.
For the first few nights, I called my Mom to ask how the tree looked. I usually had to remind her how to turn on the lights and she would say the tree looked wonderful in her picture window.
Today, the tree can’t be found in her two room apartment. I take a tour of the community area’s to see if I can find it. I run into the woman who is the head nurse in Assisted Living. She tells me my Mom had a bad day yesterday. She said my Mom was bringing many of her things out into the community space and was agitated.
I start asking about other cues to my Mom’s health, and she shares that lately, my Mom is having more conflict with people in the community. Almost every time she leaves Assisted Living she creates a conflict. The residents in Independent Living are starting to move events she used to attend because she is making it unpleasant for the other residents.
When I return to the apartment, we do one final sweep and we find the Christmas tree in her bedroom behind a chair. She suggests we just leave it there. However, it’s a real tree and I’m surprised my Mom with a very green thumb doesn’t recognize it. We get it out and set it up on a plant stand. I just not sure how long it will last. Perplexed.
While I try to find reason to why my Mom hid the Christmas tree then didn’t want to pull it out from behind the chair, I remind myself that this disease makes no sense. Was my Mom hoping to leave it there so stuffing the tree behind a chair wouldn’t seem like a really odd thing to do? Probably. Should I feel guilty because I didn’t call her every night and ask about the tree? No! But I will. Deep inside you wonder if some shard of loneliness drove her to hide the tree. However, I continue to remind myself of all things I am doing to love her, support her and make her life as pleasant as I can … without loosing sight of my family and needs. Chanted.
This is from my brother who was in town visiting with my parents when I was away.
After spending time with my (memory and behaviorally challenged) parents this past week, I came home with the feeling both they are and I am being cheated out of the things that give us value in life. When I get emotionally wrapped up with my mom’s antics, I find myself continually responding as her son, helper and then (sometimes) disciplinarian. I feel like I need to get her to understand that she is not making sense, and/or she can’t remember that she can’t remember anymore. Part of me needs to win the crazy argument logic, and the other part of me realizes this is not my mother, and there is no win if she is beaten down. Sometimes I see the fear in her face as she cannot process or comprehend what is happening. As Neil Young would sing, this leaves me feeling helpless, helpless, helpless.
There are still some things I just can’t let go of, like false statements, risky behaviors and meanness. What I cannot get my mind around (while with my parents) is that none of what we try to do for them really matters anymore, and part of the problem is my behavior. Sure we need to look out for them, but they do not recognize or care about our (siblings) efforts almost all of the time now. After spending exhausting days with them, and feeling like I am too losing my mind, I return home and feel guilt and resignation that we have already gone over the edge and are not coming back. Weakened.