Dementia Diaries: A Journey With Dementia: All The Little Blessings

They say that when you are feeling low to think of all your blessings and it will help to lift you up.

The past couple of months have been full of highs and lows. I miss my mom terribly, and now that she’s gone physically I feel like all the years of missing her have hit me like a brick. I missed her while she was alive, but I tried to keep it together to care for her. I still had her here to hug and even talk to, even if she didn’t understand. Now she is gone, and the grief of the past 7-10 years have caught up with me. My mind turns back to so many things….back to how she was before she was diagnosed; back to the little changes, before she was diagnosed, that left me feeling hurt and bitter; back to learning how to love her again, despite her illness; back to the past year, months, days and hours of her life.

It’s hard to not look back and wonder why. Why did this happen to my mom? Why did God allow this to happen to her? So many times we had prayed for a miraculous healing. Where was our miracle?

I don’t think there’s always a why. Sometimes, bad things happen to good people. Sometimes God steps in and sometimes he lets life play out. Sometimes there’s a reason or a bigger purpose, and sometimes it’s just the luck of the draw. Either way, I do believe that there are things that we can learn from each hand we are dealt. We can choose to let the grief consume us and to crumble under the pressure, or we can choose to grow and stretch ourselves in ways that we never thought possible. That doesn’t mean that there aren’t moments of grief. I have spilled many tears along the way and continue to do so even now. But, as I sit back and reflect on all we’ve been through, I realize that we have been blessed many times along the road. God didn’t answer our one big prayer; Mom never found a cure. But there were so many, many little prayers that were answered along the way. The journey has been hard, but I know he didn’t turn His back on us. I thought it might help to write down some of the blessings, the miracles, the answered prayers, that we have witnessed over the past several years.

To start with, Mom never knew what hit her. In her younger years, she did make mention a few times about how she was afraid to die or leave behind her family at a young age. It was such a pain to get her diagnosis but in a way it was a blessing that it took so long because Mom never had to know that she was living with a terminal illness.

Mom was able to be home until the very end. This is not typical of this disease. It was so important to my dad to keep her at home and I know that’s what Mom would have wanted, too. No doubt she lived longer because she was able to stay home. It wasn’t easy, but it was a big blessing to us to have her home.

Mom never got violent. So many people with FTD become violent and end up having to be sedated or living in a facility. I don’t know how we would’ve been able to manage her at home with caregivers and grandkids and so on if she had become violent.

We always had the help we needed. During our transitional time, we had sweet ladies from our church come over to volunteer and watch Mom. We had family help for a period as well and every time we started to get worried about needing to hire another caregiver or two, someone turned up.

Up until the very end, Mom never became fully incontinent. While she spent her last year in diapers, it was mostly just pee that we had to change and she still used the toilet on occasion. I won’t get into full details on the toilet issues, but what a blessing it was to not have to change poopy diapers on a daily basis. I know that was one thing my dad worried about and don’t get me wrong, we did have messes to clean on occasion. Since she went through the toileting motions everyday, it helped significantly to ease that burden.

Mom was healthy. Pneumonia and UTI’s are common and frequent in dementia patients and we were lucky to not have even one UTI, infection or pneumonia incident. We had one hospitalization earlier on to remove her gall bladder; other than that we rarely had to take her to the doctors for any kinds of sicknesses. It made it more difficult getting her qualified for hospice, but how fortunate for her and for us that we didn’t have to deal with the challenges of sicknesses and hospitals!

Mom never forgot Dad, and I believe she never forgot me either. She said both of our names up until a few months before she passed away. Even though she couldn’t speak any words those last few months, she knew who my dad was and she seemed to know who I was. She forgot most everyone else (although she may have known deep down and was unable to communicate it), but I am especially thankful that she always knew my dad.

When her time was nearing the end, there was a lot of fear and anxiety. The biggest thing we worried about was her being in pain and having a dramatic, painful, end-of-life experience. We prayed a lot, especially my dad. He asked God to spare her the pain, to let her go in her sleep. That is exactly how she went. Her passing was very peaceful and she didn’t seem to be in any pain during those last few days.

Lots of prayers went up for family members (who wanted to say their good-byes) to make it in time to see Mom before she went. The night nurse on that Tuesday night before had thought she’d pass through that night, or by the end of the day Wednesday. The last visiting family member flew in Friday morning and Mom passed Saturday morning. Everybody made it to see her and she spent that last week surrounded by so many people who loved her.

Let’s not forget to mention the timing of it all. The big bummer was that we missed my cousin’s wedding. BUT, the timing of everything was truly amazing. When Mom started to take a turn, and I had a big gala that I was putting on for the foundation, I became worried. I admit that I did pray that nothing would happen before the event, and she was spared during that time. Having everything happen during the summer allowed my brother and his family to be here for most of the summer, both to spend time with her and to be with her during her last moments. I will forever be grateful that they were here with me during those last two weeks, especially when the hospice doctor came to give his assessment. All of the grandkids were out of school and able to be where they wanted to be: by grandma’s side. We opted out of the extra curricular activities over the summer, a decision I had struggled with but had turned out to be another blessing.

Family, friends, church family…we were blessed with so many great people who helped us to get through this hard time from meals to the funeral luncheon to gifts and cards. I’ve written a lot about this on my other posts, so I won’t get lengthy here, but I do believe people were inspired to do all that they did to help us get through. They were our angels.

There are so many other little miracles we saw along the way. Like the time when we had to take her car keys away and it turned out she had a flat tire and wouldn’t have been able to drive that day, anyway. Or the time that she wandered onto a busy street and a church member just happened to be passing by and found her, putting her in their car and driving her home. Or the time when my sister arrived, just in the nick of time, to intercept my dad’s coin collection that she was attempting to spend on her sleep aid medicine at the store. Or even the fact that the cashiers at the store watched out for her during that time (when she would sneak out of the house to try and buy her meds!) We always seemed to be one step ahead of disaster and it was nothing short of a miracle.

We all have our own beliefs and I am certainly not trying to force mine on anyone. To me, it seems obvious that there were moments of divine intervention, so many more than I even wrote about. So many prayers were answered along the way. I cannot be convinced that any of this was coincidence. I will always mourn the loss of my mom. Maybe the day will come where I won’t sit and wonder why. Maybe. Mom didn’t find a cure, but God helped us through. I am grateful for the tender mercies and the blessings that we have been given throughout this journey.

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