As difficult as it was to lose my brother....my children's beloved uncle....the true test came just a few short months later. As I mentioned previously, my mother (Taz's grandmother) had developed Alzheimer's and had also suffered a minor stroke several years earlier.
The year before Frank's death, mom's health gradually declined. She lost her ability to walk, use the restroom without assistance, feed herself, dress herself, and so many other things. She became lost somewhere in her mind....drifting back and forth between her childhood and present time, quite often confusing places, names, and dates. She had her good days and bad days....on the good days, she still had that twinkle in her eyes and her sense of humor....on the bad days she would just sit there, like she was in a fog unable to remember who you were. It must have been so sad and depressing, not to mention frustrating for her. I can't imagine what it was like for her -- to go from being so active and independent....to losing all abilities and needing to depend on others to care for your basic needs. For those who have never experienced Alzheimer's, it's like watching someone die slowly....they slip away from you a little bit more each day, becoming lost somewhere in their own mind.
As I mentioned before, we spent time visiting with mom while we were there for Frank's funeral. The boys & I went back to visit for a day between June & July. Years earlier, my sisters had made the promise to let mom stay in her home rather than go into a nursing care facility....thus they took turns caring for her once she could no longer care for herself. They lived right next door, so although it was challenging at times in many ways it was easier for them since they were so close by. We lived several hours away, thus it was difficult for me to go and help out as often as I would have liked. My oldest sister and her daughter took on the daily tasks of feeding mom, changing her, giving her baths, etc. The boys & I went to spend the day with mom since my sister & niece had an event to attend....they needed a break and we were looking forward to visiting with mom. It was a shock to see just how much she had declined in just the few short months since we had last seen her.....she was no longer able to walk on her own and needed to be moved from room to room in a wheelchair....she couldn't feed herself nor use the restroom on her own.
That visit was difficult in so many ways.....not only for Taz, but for the rest of the boys. It was hard for them to see their beloved grandma sitting in a chair, looking so frail and weak.....her face was different, her voice was different, and she seemed "lost and confused". The one bright moment to it all -- she was having a good day because on that day, she knew who they were....she knew their names and remembered everything about them....and her face lit up as they walked in the door and said "hi grandma!".....a lone tear streamed down her cheek, as each boy gave her a gentle hug and said "I love you grandma". When Taz gave her a hug he said "are you happy to see me grandma?" Her face just beamed as she said "oh yes, I missed you!" As we sat visiting, her face lit up....she was so happy to see them and listened intently as each boy chattered away about how school was going, etc. When the time came, the boys helped with feeding her lunch....and the 2 older boys helped me to move her into her wheelchair and back into the other room to change her.
At one point during our visit, I just sat there and watched her with the boys. How frail she looked....how much she had changed since I last saw her. She had seemed so sad & lonely when we first walked in the door, yet now she was just glowing....you could see by her facial expressions how much it meant to her that we were there. I couldn't believe how much the Alzheimer's had aged her. I remember thinking to myself -- it was her voice, and in my heart I knew it was my mother....but the woman sitting in that chair didn't look like the mother I knew & loved......she was so frail, and would often just stare off into the distance....just a shell of her former self. Since she had difficulty holding a spoon, etc she had to be fed. Since she was unable to use the restroom, she wore adult diapers. When it came time to change her, she apologized for "messing"....I fought back the tears as I carefully cleaned her up, and said "it's ok mom, don't worry about it." As I lifted her back into the wheelchair, I thought to myself -- "would my children have to do these things for me one day?" I felt sad for her....she had once been so active - so outgoing. Now because of the Alzheimer's, she was almost as helpless as a newborn child.
We had planned to spend the night, but the visit was too difficult for Taz....he has always been so gentle & helpful when it came to his grandma....he was always so protective of her and loved to spend time with her. But I could tell by the way he acted, it was difficult for him to see her this helpless and frail. He was afraid to go near her -- and you could see the sadness in his eyes -- this wasn't the grandma he remembered. Thus I decided perhaps it would be best if we just went home for the night....so after changing mom and feeding her dinner, the boys & I said our goodbyes. It broke my heart to leave....I wanted to scoop her up in my arms and take her home with us -- at least then she wouldn't have to sit in that chair staring out the window and feeling lonely. But I knew my siblings would never agree to something like that -- letting her move in with us (I had suggested that years ago when she had her first stroke and was told "no"). Thus with a heavy heart, I gave her a hug & kiss goodbye.....loaded the kids into the vehicle, and proceeded to drive home. On the long drive home, my mind flashed back to the many times mom had come to stay with us for a week to visit. I thought about how active she had been....even when she had to use a cane for assistance in walking -- she still loved those visits, and looked forward to them as much as we did. She was happy when she was at our house -- she laughed and seemed so comfortable....oh how I wish she would have moved in with us years ago when I offered numerous times!
In August, hubby & I took the kids on a mini vacation.....on our way to the campground, we stopped at mom's house for a visit. I could not believe how much she had changed in just a little over a month....she was even more frail, and she had lost weight. From what I had been told, she was becoming more and more confused each day and just lost within her mind...and she slept a lot. Yet on that day, once again she gave us a 'gift'.....she was awake and alert, she knew who we were when we walked in the door, and knew the boy's names. She smiled that beautiful smile -- looked at us and said "well hello there!". She listened intently as the boys chattered away about where we'd be going for vacation and she laughed and joked around with them. Part of me didn't want to leave, but since we had to check-in at the campground at a certain time, we had to get going. As we said our goodbyes, little did I know at the time it would be the last time we'd see her. It broke my heart to leave that day.....she wanted to come with us, although I'm not sure if she really understood where we were going. In the past, each time we'd visit her....she always asked me to take her home with me -- she loved coming for visits to our house, but once her Alzheimer's got worse....she was no longer able to do that. As I hugged her she said "take me with you, I want to go to your house - please take me with you, I don't want to be here anymore." I forced myself to smile and said "next time mom ok? I have to check with the girls first"....even though in my heart I knew that her health had declined too much for her to be able to come to our house to stay for a visit like she used to.....thus there would never be a "next time".
In mid October, my sister called to tell me that mom had a mini stroke. Her health was failing and they had decided to contact Hospice. I knew in my heart that it would just be a matter of time. I prepared myself to break the news to the boys.....once again I would have to explain death to Taz....and try to help him to understand that his grandma would soon be leaving this earth. I knew from what my sister had told me, the Hospice folks had brought in a hospital bed for mom so she would be more comfortable and they were giving her pain medication. I debated whether or not to take the boys down to visit....so they could have the chance to say goodbye. As I tried to decide what would be the best thing to do, in my heart I knew it would be too traumatic for them to see their grandma laying in a hospital bed in the middle of her living room....I didn't want them to sit there and have to watch her die....thus I decided that it would be best if we didn't go to be with her at the end. I wanted their memories of their grandma to be happy ones....not something like this. It was by far the most difficult decision I've ever made in my life.
My niece called one day and said "you'd better get here if you want to say goodbye, I don't think it will be much longer." I explained my decision to her, and she understood. We discussed the fact that we both thought mom was hanging on.....waiting for me to get there....we both cried as I said "I can't...I just don't want the boys to see her like this." As we talked about everything, we agreed that my niece would hold the phone for mom so I could at least call & let her hear my voice. Perhaps then she would be able to "let go" and be at peace? A short while later, I called....from what I had been told, mom wasn't able to speak very well due to the stroke, thus I wasn't expecting to hear a response from her when I spoke. Yet she gave me one last gift.....she recognized my voice and she responded. I told her how much we loved her, and that if it was time, then it was ok for her to let go.....as I said "I love you mom"....the tears streamed down my face. Then I heard her voice...."I love you too my (she said my name)".....my niece took the phone at that point and with excitement in her voice said "did you hear her? did you hear her? say it again grandma"....and once again, she held the phone up for mom....as I cradled the phone to my ear, I heard my mother's sweet voice say "I love you too". She passed away peacefully shortly afterwards. I will always be thankful for the fact that no matter how much the Alzheimer's changed her, she never forgot my children -- she never forgot their names or mine.....she knew us, and knew that we loved her.
When the boys got home from school, we explained to them that their grandma had died. We packed our stuff and prepared to go down for the funeral a few days later.....as much as I tried to prepare Taz, I had no idea how he would respond. The visitation service was difficult for him, but he did fairly well....spent most of his time in the "side room" playing a video game and visiting with his cousins. The funeral home was familiar to him, since we had been there just 8 months ago for his uncle's funeral, and he felt safe in the side room. There were so many people at the visitation though -- it was almost an overload for him, but he managed to keep himself together so we could do what needed to be done. I could tell that he was more than ready to leave though, once we put on our coats and got ready to head home to my sister's house for the night.
My aunt was scheduled to sing at mom's funeral service the next day....during the visitation she had asked me to sing with her. She & I had never sang together before, so we practiced the song during the visitation.....one of mom's favorite songs "Amazing Grace". Years ago I used to sing with my dad, we even entered a talent contest. Mom always loved to hear me sing....and during one visit to our house she asked me why I no longer sang in public. I explained that when dad died, I "lost my voice"...the desire to sing just wasn't there any more. At the time, she joked with me and said "well you'll sing for me one day....you'll find your voice again". I remember at the time I had just laughed and said "don't count on it mom." She just smiled and said "yes you will, you'll sing for me." Funny....somehow mom got her wish. The day of the funeral, my aunt wasn't feeling well and was unable to attend.....thus I had to sing solo....I would be singing for mom one last time after all. My siblings told me not to worry about it -- everyone would understand if I couldn't "handle" singing on my own. But I told them it would be ok, I'd do it. My voice cracked several times, my knees were knocking, and I felt like I might vomit at any moment....but I pushed myself through it, I found my voice and sang the best that I could....I didn't do it for anyone but her.....I gave her her wish....I sang for her one last time.
During the funeral service, Taz was on edge.....he sat in the other room with his dad. Right towards the end, as I began to sing.....my oldest sister walked out into the other room crying, then my great niece followed, crying as well.....as hubby stood there with tears running down his face, trying to comfort both of them.....it became too much for Taz. He had a complete meltdown and went running from the funeral home! Of course I had no idea this was happening, because I was standing near the casket singing. As Taz bolted out the door, hubby chased after him. Thankfully he didn't run into the road, but instead ran about 10 or so laps around the funeral home. It was just too much for him -- his emotions didn't know how to process seeing everyone so upset and crying, he didn't know how to deal with the death of his grandma. He had reached his limit and wanted to get away from all of the emotions -- he couldn't process it all and just became overloaded. By the time hubby caught him, the funeral had ended.....he had Taz in our vehicle (Taz was in FULL meltdown mode -- screaming, kicking at the windows, crying, etc.). He calmed down a little bit on the way to the cemetery, but began to get upset again when we all started to head graveside, so hubby stayed in the vehicle with him.
I became furious afterwards when hubby told me what had happened....not angry at him or Taz, but angry at the relatives & friends that just stood there watching & laughing as hubby chased after Taz outside.....none of them bothered to try to help catch him or calm him. My sister-in-law stood at the vehicle once hubby caught him & kept Taz inside safely, so hubby could come inside to tell me what was going on & help with gathering up the other children....other than that, no one else bothered to help -- they just walked by and stared (or laughed). At the graveside, everyone just stood and stared or walked past....as Taz threw himself onto the ground screaming, crying, and kicking. A dear friend of ours was there -- Taz's godfather, and he helped while we were at the cemetery. I am so thankful that he was there with us -- we needed his support more than he will ever know! Later at the luncheon, as I told those around us what had happened....some relatives actually laughed -- they thought it was funny! Seriously? What is funny about an Autistic child running from the funeral home? Something bad could have happened (thankfully it didn't) -- I fail to see the humor in that! What is funny about seeing a child have a meltdown like that, and doing NOTHING to help him or the parents, especially when said child is your own relative?!? I promise I'll go on a rant about family later....
Anyhow, the funeral ended, Taz became calm at the luncheon.....he sat next to his cousin and played a video game, then later I took him out to the playground so he could run & play with his cousins. On the drive home later that day, I finally began to relax a bit.....Taz was back in his comfort zone and calm....he fell asleep on the long drive home.....the worst was over, and we had survived. My mind began to race.....I realized after the funeral that I knew I couldn't count on anyone but my husband to help with Taz. I knew that I had to start making plans now for the "what if" things -- who would be there to help take care of Taz and the other boys should something happen to hubby and I? I knew I would have to help the children work through their grief and the loss of their grandma.....I knew that the days ahead would be difficult for them, thus I had to push aside my own feelings and grief to help them. I began to think about how my relatives have treated Taz over the years, and how I saw their true colors during the funeral and what happened afterwards. I knew I would have to start planning for the "what if" things that would one day happen.....and the reality hit me that I knew I couldn't count on my relatives to be there for Taz and the rest of the children if someone should ever happen to hubby & I.
On the drive home I cried....I cried for my mom, I cried for myself, and most of all....I cried for Taz. Knowing how he responded to the death of his grandma & the funeral, how would he respond one day when it was my time to pass? And who would be there to take care of him and comfort him? Years ago I had asked my mom why she did the things that she did -- sacrificed her own needs for us kids and always put us first, even after we became adults. My mom had told me...."one day, when you're a parent you will understand -- no matter how old they are, they will always be your baby"....as I glanced in the rear view mirror at Taz sleeping calmly in his seat, I finally knew what she meant. No matter how old your children are, you never stop worrying about them....you will always feel the need to protect them and be there for them. I knew in my heart, that no matter how old Taz was....I would always worry about him, I'd always feel the need to protect him.
It's difficult enough when you have "normal" children -- and have to face the fact of your own mortality.....but when you have a child with special needs like Autism, you really have to plan and prepare for everything.....whether or not you like it, you have to plan for the "what if" things....and it takes a major event like this to make you realize that the people you thought you could count on to be there to help -- really won't be.....that reality is like a slap in the face, like a knife through your heart....and you realize just how alone you are. Even more heartbreaking, is the realization that your child is treated like an outcast by your own family members. Yes, I realized many things on the drive home that day.....and decided it's time to make some major changes.....
