If visits before weren't weird enough,they certainly are now. I was able to visit my mom, with my kids, three times before lock down. Then the nursing homes where locked down for about two and a half months and I couldn't see her at all. Honestly it was a bit of a relief because visiting her always gave me anxiety and my kids always had to come to get me through it. But that's another story. Once the nursing homes finally were allowed to have visitors it could only be one family member once per week. I am the only family member in town so it had to be me and without my kids. I had to get tested for covid-19 as well. Not a pleasant experience. It was like getting heavily chlorinated water up your nose and lighting it on fire. The fire part was a description my sister used and I feel it fits. I actually asked the nurse if my nose was bleeding knowing that it wasn't but feeling like it could be. Now comes the actual visit. I thought I would get to sit beside my mom or a least close to her since I had to wear a mask and I tested negative. But no. They had those potable folding tables and made us sit at either end or tried to. I sat, but my mother wouldn't sit. She wanders all the time now and is easily distracted. So I sat, and a worker walked with her around the little garden they had out front where they had the outdoor visitation set up. So I sat and sort of talked or said random things as she went by. The whole thing was weird, which settle my anxiety pretty quickly. My sister and her family came for a visit from Toronto. She wanted to see mom so she got tested and I got re-tested because the tested are only good for 14 days. The second time wasn't so bad for me, she would tell you otherwise. We managed to squeeze in two visits with mom this time. They are now allowing 2 family members to visit together so I didn't have to go alone. One yesterday and one 2 days before that. The first visit she seemed grumpy to me. My sister persevered and made the most of it. This was an "indoor" visit that ended with us taking her out to the garden because she wouldn't sit. She wanted to leave. I tried to show her a video of my daughter painting thinking that because she looked like I did as a child it would make her smile. And of course it didn't. But that point she said "oh, another kid" and kept walking. That visit bothered me so much that I couldn't sleep the night before our next visit. I was up from 1 or 2 a.m. until about 4 a.m. then cried in bed and then my hubby got up with me and we watched a show about invasive species or something. It talked about snakehead fish anyway. The second visit was either a better visit or similar enough to the previous one that it hasn't bothered me yet. We were allowed to stay much longer because my sister was from out of town and we could stay in the fenced in garden again. A kitchen worker had come out for her lunch break and she was actually able to get my mom to sit down for about 5 minutes beside her on the swing. She was a charming girl from I believe Indonesia or someplace similar and was living with someone else's mom who had dementia as well. She and her family (2 kids I believe) were able to stay at the house for free and provided free care to woman on behalf of the daughter who only had to pay for care on the days she worked. I thought that was a nice arrangement. I enjoyed talking to her while my mom and sister wandered around the garden some more. She was the kind of person that understood dementia without really knowing much about it. I was nice to able to talk to someone who understood what it was like to care for someone with dementia but also was very compassionate and sensitive toward the families it affected. She seemed to understand why I couldn't continue to look after my mom, and why the daughter couldn't continue to look after her mom. It's very painful and stressful when it's family.
0 Comments
So, last night around 08:30 PM I got another call from my dad. This was the call. The one I new would be coming in the near future but somehow didn't think it would be this soon. My dad wasn't there when my grandmother took in her last breath of air. It's ok though. She wasn't alone, as hospice care means having someone there round the clock. I just thought she had longer. the way he described her to me just two days prior gave me the impression that she had a little longer to live. It doesn't matter though. She couldn't eat anymore, or get out of bed. She didn't recognize my dad anymore. He did have a visit with her earlier that day with his common-law wife. She had recorded my grandmother playing amazing grace several years earlier and played that for her, and her eyes fluttered open for a moment. Maybe there was recognition there.
A nurse was with her when she took her final breath. She had been adjusting her morphine drip to make sure my grandmother wasn't in any pain. Palliative care and hospice are there to help during the last year of life. They provide support to the family and care for the individual. So she wasn't alone and she wasn't in pain. The pain that survivors are left with is just a measure of the love we have for them. It's a good thing. It doesn't feel good but it is good. Expressing it is good too. You heal faster when you do and you cope better by feeling it. But more on feelings later. The funeral will be this week. I can't go because I live in a different province and would have to self quarantine for two weeks. The funeral home is suppose to be providing a video conference for anyone unable to physically be there. I'll let you know how that goes. In my family dementia goes like this; my great grandmother on my mother's side had Alzheimer's Disease in her 80s. Then my grandmother on that same side dies early from a rare disease, that no one can remember the name of, when I was eight. Then my mother gets dementia early (67). Her older sister, however is fine. On my dad's side his mother also has Alzheimer's Disease. She's now in her 90s. Will I get dementia? It's very possible.
But this post in not about whether or not I will get dementia. Today, I got a call from my dad. My grandmother has been moved to palliative care. When I heard my phone ring and saw it was my dad the thought that this was the call crossed my mind. And basically it was that call. She can't eat anymore. Her brain has forgotten how to chew food. She is too weak to pick up a tea cup and hasn't been strong to get out of bed for a few weeks now. She was hospitalized for falling and breaking her hip and due to covid-19 the private home she was in wouldn't take her back because the owner said they didn't have the capacity to quarantine her (even though the nurses said they could). When someone with dementia loses the ability to eat it means they've come to end of the disease. Many people will opt for tube feeding which only serves to prolong the dying process. There is no coming back from this. Palliative care is there to provide the best care they can in the way of comfort and pain management so that she can at least be comfortable during her remaining time. While they die we must let go, the hardest lesson love has to teach us. Letting go isn't forgetting though. We have to let go in one way to find new and different ways to hold on to what we have left, the memories. Below is a quote I snagged from the internet that sums up what grief is really meant for. That moment when the thing that you've been dreading actually comes true or gets confirmed. Devastation. It hurts, you can barely understand it, and you don't know what to do about it. Even though I was fairly sure she had it I was actually hoping it was something else. Up until that point in my life dementia was not a possibility for me or anyone in my family. My sisters and I had all gone to school for many years, so we are safeguarded against it right? My mom, I though she had gone to college but no, she had taken three accounting courses and became a bookkeeper. Fine, she was always doing stuff like reading, sewing, needle work, even some knitting. She even became a Guider when we joined Girl Guides to stay involved and she continued on for many years after we left.
She moved in with me almost a year after I had my daughter, child number two. We asked her if she was interested and watching the kids while I went back to work. The plan was, she would help for a few years until both kids were in school then, if she wanted, she could stay with my sister in Toronto for a while and help them if they needed it or just spend time with her kids, then she could chill with my other sister in Newfoundland (she doesn't have any kids at the moment). Then, she could start the rounds all over again. That was what was suppose to happen. Something like that anyway. She would get to spend time with everyone and enjoy being Nanna. But no, life would go in a very different direction. My mom, never wanted to talk about death, or getting sick, or wills, or any of that stuff. We asked her once as teenagers that if she died what would she want as part of her funeral. The only answer we got was "play Amazing Grace". OK... So, as you might have guessed, we are left with a lot of hole to fill out of necessity. I make all the primary decisions and I discuss future decisions with my sisters and I'm usually filling them in what that actually means. They don't know a lot about dementia, palliative care, or nursing home care. Neither do I but I get filled in as I go and relay that back to them. I've taken a certificate course through the local university about dementia. Does that make me an expert? Heck no! But it does give me a heads up and honestly the more you understand the disease and become familiar with it, the better caregivers can cope. And it's true. I have less anxiety when I know more and it helps prepare me for that possible future. And let's face it, if you prepare for it and don't get it at least a lot of things get taken care of anyway and that relieves a lot of stress on spouses and children and other family members, but more on that later. We all have a purpose in life, or so I'm told. The purpose of this page will be to document my journey as a caregiver for my mother with dementia. This role can feel really, really lonely but know that you are not alone. Unfortunately, dementia is one the rise, which means more and more of us are becoming caregivers. I am my mother's POA for her finances and health decisions and I was also her primary caregiver for about 3 years.
I want to share those experiences because they are sad, scary, stressful and lonely. I want to share what I learned so that others can see what it's like, possibly make better or earlier decisions, or at the very least have an idea what's ahead of them. |
For my mother...
She was diagnosed with dementia in 2018. ArchivesCategories |
Photo used under Creative Commons from kuhnmi