SLOWLY LOSING MOM
In March of 2017 Mom just turned 65 and we were giving some of the most devastating news a family could get. In my opinion this is the WORST possible way to lose your loved one. The words you have advanced early on set Alzhimers. If I'm not mistaken it was the actual day of her 65th birthday dinner with friends. As a family we put on a brave face and hugged, said our hellos and had a lovely dinner and a beautiful cake I had made for her. Around this time I was also dealing with my own trauma and recovering from a car accident, that we will get into in another blog.
Hearing my mom had Alzhimers neither mom, dad or I were in denial which I always say to dad is one of the best things instead we took this diagnoses head on and went into what can we do if anything do to make things easier for mom. About a month after diagnoses she got the most wonderful news any parent can get other than they are going to be parents is that the first grandchildren would be coming fall 2017, yes I said grandchildren TWINS, not very often can parents say they are parents and now soon to be grandparents of twins. Shortly after that news, Mom, Dad & I headed for some R&R to our house in Palm Desert. At this point I was really starting to notice a change in mom. Before her diagnoses not only were dad and I noticing she was starting to forget simple things like appointments where she needed to go, and forgetting to have dinner ready for my dad when he got home from work, also putting dirty dishes back into the cupboard and clean ones into the dirty dishwasher. Shortly after our trip to the desert Mom and Dad and good friends were headed to Europe for a 3 week or so river boat cruise and this is when I was told at the hair salon, one day mom was in getting her hair done she couldn't turn her car off she had forgotten ( it was a push button) pretty simple right? Dad also told me when I was checking in to see how there trip was going told me Mom had gone to the bathroom and happened to turn his head and look outside and there he saw his very confused wife, at that point she has to be taken to the bathroom so she didn't get lost, also its when I told dad about the hairdressers and we had to for her safety and everyone else on the roads that she would no longer be driving. That is never a decision you want to make for your loved one, you are basically taking away there freedom and independence. Mom handled the news fairly well as she was starting to scare herself when she drove. She knew she was forgetting and didn't want to cause an accident, it was also at this time as I wasn't working I would be the one taking mom out driving her to appointments etc.
Fast forward a couple more months and two tiny little just over 2 pound ladies came into this world 2 months early at 28 +5 weeks. My nieces and parents grand babies had become the biggest little blessings and distraction from moms diagnoses. I'm so thankful not only for my early bonding with my nieces but to give my mom that time with them, we were in the NICU at least once a week if not more and when they finally got home we were there visiting once a week at least. Mom at this point was on a Alzhimers medication to try and slow down the disease, and it was helping the slightest bit, not for long as mom was starting to get a little more forgetful.
Skip forward little bit and I started to notice mom would be wearing the same clothes each day and not as put together as she one was and losing more weight even though we would feed her and she would always enjoy cookies, chocolate any kind of treat really. Bring in the most amazing loving husband I've ever seen when they said for better or worse my dad full heartedly meant that. He would start to help her get ready in the mornings making sure she had breakfast before he went to work, then I would be with her till he got home.
Lets move onto 2019 mom was now on the 3rd or 4th medication for Alzhimers and this would be the last one we had to get her off of it, Dad and I both noticed she was getting worse she was going downhill faster losing her more and more, yes it was slowly but every day you could notice a slight difference. At this point dad and I were starting to get a little burnt out yes even though I hate to admit it she would frustrate both Dad and I sometimes so bad it was almost like taking care of a toddler. I would treat her like a child I didn't mean to but when you've been a nanny and are around kids a lot you tend to pick up on how to treat and take care of them, its what I knew and I new deep down she wasn't a child but it was how I could deal with it at the time. It was like our roles had reversed she was now the child and I was the parent. We ended up hiring a companion for her a couple days a week who would give myself and Dad a bit of a break and C was and is amazing we love her, she would take mom out for lunch, take her on little adventures and sometimes just go for a drive to get out of the house. In 2019 as mom was progressively got worse it was getting harder to care of her at home the stairs were becoming a huge problem and she was close to falling down them a few times, we had to watch her closely and baby gate the stairs if she was in the family room and we needed to be upstairs. Now it was time to really think where the best place for her was.
Bring on the Village in Langley BC Canada. This is the first of its kind Dementia and Alzhimers facility to open in North America. As soon as we heard about it we got on the wait list, took a tour it was a beautiful little village!! Dad and I knew the moment we saw it Mom was meant to be there. Finally in September of 2019 we had to make the most horrible decision 45 years my parents were married at this point and my dad was now going to have to put his beloved wife into a care home. I know it killed him inside however it was long over due. We along with Christina took mom one day to go for a tour so she could see how beautiful the village is. After our tour and picking out her room she left with Christina for lunch and with a big smile told her I'm going to live here, my heart smiled by hearing that. Move in day was October 21, 2019, hardest thing was to say goodbye and not bring her home with us.
The progression of her decline happened at a rapid pace, she walked in on her on two feet and 3 days of her in the Village I walk into here room to visit and she looked like she was dying I still have those pics I took of her looking so awful never have I shown Dad. We still don't know what happened however I believe her body was finally like I can relax a bit and people are here to take care of me. She then was still walking a bit but with the help of a walker and a few weeks later she was put into a wheel chair and hasn't walked since. From the day mom moved in until lock down happened in March 2020, I myself was in visiting Monday to Friday from around 10am to until my dad got there around 1 or 2 pm and I would be there on Saturday sometimes or Sunday but was allowing myself usually the weekends of for the most part to have some free time and a bit of a break. We became very close with other families in the cottage and the staff who have become family to us and I still think of them as that, even with some moving on to different jobs.
Here comes covid they shut the village down from visitors coming in lucky I was so close with the day staff as they would FaceTime me so I could see mom and get daily updates on how she was, this was extremely hard not being able to see her. Dad got one special visit after a few months then they let 2 family members in at different times come for a visit 1 hr only and then in July 2020 they would only allow one designated family member to visit once a week for a hr, I without a doubt told dad to go even though I wanted to see her, I was still lucky I could FaceTime with her! After not seeing mom for 6 months in person ( she was rapidly declining) and now in a tilt back wheelchair its fancy! I was granted to switch spots with dad for a couple months in January 2021 was when I finally saw mom in person again, you weren't supposed to hug or touch your loved one, however there was absolutely no way in hell was I not hugging her and boy did I bawl my eyes out and she held my hand for the whole visit and I was not telling her no. No matter if your in a care home or not you need that human contact. Fast forward to a couple months and dad was now allowed to join me with our visits still once a week however with the nicer weather we were able to take mom out around the grounds for walks and fresh air!
In the year since covid hit my mom along with 85% of the villagers have all declined so much it is heartbreaking to see. Her cottage lost 3 more during this covid time ( unrelated to covid) I have to say I am so impressed how they handled the pandemic, there was no covid outbreak and none of the villagers got sick. a few however have broken hips and are now in wheelchairs. Out of the 3 that have passed on during covid 2 of them recently they hit extremely close to home. Dad and I were very close with one of the families as we saw them almost daily, you truly get to know them and understand what they are going through.
Mom cannot hold a conversation anymore and when she talks its a lot of nonsense, she loves to hold hands so when we visit now we hold her hand the whole time, she sleeps so much now usually through our visits, if we get a smile or sometimes love you out of her or she is talking ( can't understand its like baby talk) we take those as a great day and visit, when we leave we leave happy. We found out which I had no idea this was even an option from the family who just lost there dad, that you could have a palliative assessment to see where your loved one is and if they are in pain or not etc, we are just waiting on that and I will update when I know more.
I often got asked from people saying they don't know how dad and I did what we did for so long keeping mom home and taking care of her. My response always has been and always will be, You just do it no questions asked! My mom was there for me for 33 years when she moved into the village, I'm now 35 why would you not. No it wasn't easy, it was at times extremely frustrating, sometimes you got upset with her but it wasn't her fault ever. What blows my mind is how many of the villagers do not get visits I could never imagine putting a love one in a home and not visiting it truly breaks my heart. The cottage mom is in rooms 12 and I felt for the first time in 6 years that I had grandparents again you get attached to the wonderful villagers, help out in any way you can.
I want to say never in a million years would I wish anyone to have to watch their loved one slowly slip through your fingers from this god awful disease. When a loved one has Alzhimers or dementia you grieve them twice, the first time when they forget who you are and the second when they pass. I put on a brave face when I go into see mom but my heart is truly shattering inside. I do cry more often now than ever before, losing a parent especially to something so evil and cruel is so hard to really explain the pain that you go through to someone who has never been in this situation. The tears flow quickly usually at night time because that's when I'm alone. I often think about the things I won't get to do with my mom, if the time ever comes and I get married, I will never get to go dress shopping with her, if I ever have kids which is looking like no at this time she will never get to meet those grandchildren or spoil them like I know she would have. I watch my dad who is the strongest person I know get teary eyed as he's losing his wife the love of his life.
With the holidays around the corner this will be the second one in 50 years he won't have my mom by his side... last year was very hard for us however with my nieces where here it made the day special, but man we missed mom not being with us.
The last thing I'll say is hold your loved ones close you never know when you might lose them.
The picture to the left is often how I send visits with mom her holding my hand, I take pictures each time I visit, not the happiest photos however they are part of my story and I will treasure them for the rest of my life!
XOXO Erin