It's almost the end of summer (well, Labour Day weekend is pretty well the unofficial end). Yesterday afternoon, I found myself reading blogs about people who's parent(s) have Alzheimers. I think I was subconsciously having a tough day and it somehow comforted me to read this blogs.
My mom passed away this summer after a 16 year battle with Alzheimers. I think the end of summer/change of seasons is somehow signalling to me that time has kept moving and I've survived. What have I survived? I survived some of the most terrible times. Somedays, I wasn't sure I'd make it and I wasn't even the person with the disease; I was "just" the family member/caregiver. And I've survived my mom's passing. It was something that I knew would come one day, like every human knows, but I was terrified of it. I guess after watching her slowly "die" for 16 years, my imagination would run absolutely wild with how the end would be.
I thought it might be good to blog about this. Long before blogs, I survived many, many insane days with mom and I think that blogging would have been an incredible outlet for me. Instead, to cope with the day-in/day-out challenges, I'd call friends/family or I'd go to internet chat rooms for Alzheimer families. Now that I've survived, I thought I'd tell the tale in an effort to purge a bit and to also educate people out there who are living the nightmare of Alzheimers.
As the youngest of three children, I was the last to leave home. I stayed with mom throughout my schooling (including 4 years of college) and for the first few years of my career. My 2 siblings had moved out and had their own lives. Truthfully, one of them was estranged from the family for a few years and was basically disowned by my mom (who was convinced this child was a thief and was constantly stealing from her).
The next section of this entry is in point-form (as taken from my log of observations regarding my mom; the family doctor advised us to start a log of behaviour when we first approached her about mom...a funny aside...funny how "log" is just one letter short of being "blog"!). This is in no way a full day-to-day documentation of caring for someone with Alzheimers. It's simply a glimpse of it. Everyday is full of challenges, bizarre conversations and sometimes arguments (as much as you try not to argue with them, it gets impossible somedays).
Constant over the years
• Losing purse, glasses & blaming other people (i.e. they stole her items from her). The "suspects" even include her own children.
• Constant suspicion re: teenage neighbour – that he’s wrecking things around yard, that he’s been in our house.
• Short term memory failing here & there (staring 1992...gradually gets to the point that she cannot remember 5 minutes ago)
• Long term memory failing (starting 2001)
• Repeats herself
• Easily confused
Events began in 1992 with small symptoms after my father’s sudden death. Mom was always very dependent on dad and didn’t do any of the banking or household administration for as long as they were together (approximately 40 years). There are 3 children in my family: sibling1, sibling2 and me, “citygirl”. For the first 8 years of the disease, we manage mom as well as we can. Her symptoms are mild enough that it's manageable. I sought advice from a counselling centre at school and learned about Alzheimers. I mentioned this to my siblings who shot the idea down with "mom's just getting old or missing dad". But I knew mom was facing something much larger and darker than age or heartache...
Over the years, these symptoms develop into much larger issues.
• November 2000 – Mom walked into neighbour’s home and to confront their teenage son (“D”). D does not live there – mom is in the wrong neighbour’s house – not even close to D’s real house. However mom is convinced that D does live there and that the young girl who lives there is his daughter (hmm...D is 12 and the girl is 5...let's do the math). She believes D has been targeting her house and vandalizing it. (ie turning on outside water taps, throwing garbage into yard, peeing in garbage cans)
• January 2001 – Mom reports that she received a letter from her sister (who is deceased) that morning regarding her niece. The letter requests Mom to sponsor the niece to come to live in Canada. When I ask to see the letter, Mom spends most of the day looking for the letter.
Later in the day, mom tells citygirl that the niece visited her that morning and asked directly if she could live there. Citygirl asks mom about the letter from her sister. Mom does not recall anything about a letter. Citygirl suggests to mom that she is confused. Mom admits that she is confused and does not know why she is thinking these things.
• January 2001 – mom up most of the night. Yelling/crying at citygirl. Complains of lost blanket, that she’s cold...is whining in almost a child-like way. Mom announces she's going to call sibling1 at 5:00 am; citygirl discourages. Mom finally goes to sleep.
• September 2001 – mom wants to go “home” to her native country and live with her brother (who is deceased)
• Early October 2001 - mom has a check-up booked at doctor's...she cannot remember how to get to Dr’s office that she has been going to for 40 years/it's 5 minutes from her house. She calls the Dr's office and identifies herself using her maiden name.
• Mid October 2001 – mom does not recognize her own house. She does not know where she is living, thinks she is staying in someone’s else’s home.
• Early January 2002 – mom has started wandering. She does not recognize neighbourhood and does not know how to get to church, store or doctor. Went to the convenience store across the street and the cashier called the "Wandering Bracelet" number (our city has a program for Alzheimers patients to wear id bracelets to help people who find them lost).
On another night at 10:00pm, citygirl is out (yes, I tried to have a little social life despite the insanity I lived with) . The next-door neighbour finds mom banging on her own front door, demanding in a loud voice to speak to the landlady. When neighbour told mom that this is her house that she owns and lives in, Mom does not recall this and is shocked. She continues to say the landlady has locked her out. The neighbour helps Mom look through her coat pockets and once the key is found on Mom, she goes in.
• Mid January 2002 – mom is calling citygirl & the siblings 1 & 2 the moment one of us leaves to ask to be picked up and taken home since she’s not in the “right” house. When explained that she is, she gets very upset. She is not sure what country she is in or why. It is thought that mom has had a small stroke at some point to explain this sudden decline. Sibling1 has Geriatric Doctor do home assessment – score was 12/30 (that's pretty bad...means mom couldn't tell what day it is, what year it is...etc).
• Early February 2002 – mom continues to not remember her own house or belongings. Still thinks she is staying in someone else’s house. She asked citygirl how she knows her. Citygirl tells her that she's her daughter. Mom asked if she was ever married; when shown picture of dad (they were together for approximately 40 years until he passed), she does not remember him. She also asked if she had other children; when told of 3 children (citygirl being one of them), she is shocked and does not recall this.
• Mid February 2002 – Sibling1 admits mom to hospital under emergency – it is quite evident that mom is getting worse day by day and has maybe had silent strokes in past few months. Mom has become quite physically aggressive in wandering and trying to "escape" us and it is a bitter winter. We fear that we can longer keep mom safe.
Mom even tries to escape the hospital and has a scuffle with a security guard at the hospital. A few days into her hospital stay, Mom suffers severe bout of pneumonia which she fights off (thank G-D, otherwise all of us would have never been able to let go of that guilt – trying to put her in secure environment and end up killing her with pneumonia).
• May 2002 – mom admitted to temporary seniors/nursing home. It is quite difficult to get placed in nursing homes in our city so we take this opening as a temporary place for mom until we can get a better place. At least it's clean and safe.
• Sept 2002 – mom admitted to more permanent home. This home houses residents that are still physically well but are not able to function by themselves due to Alzheimers.
• May 2004 – mom suffers bout of shingles. Is extremely tired and weak for several months. Starts to become unsteady on her feet and losing continence.
• August 2004 – I took mom to get her hair done one day at her usual salon (outside the home). We were going to eat before hair appointment. She got out of car and became very pale and disoriented. She said she didn’t feel like herself and wasn’t sure what was wrong. She had wet herself and was unable to tell me. Sibling2 brought a change of clothes and after eating, she seemed a bit better and then after hair appointment, she was quite perked up...it was like 2 completely separate days within a few hours.
• September 2004 – mom is now using a wheelchair most of the time. She is very unsteady of her feet and is very hesitant to walk. (I later find out that Alzheimers patients sometimes suffer from spatial issues and cannot process what they are viewing, especially floors and stairs)
• October 2004 – mom admitted to another nursing home because the first home was no longer able to care for her. She needs full assistance in washing, grooming, clothes, eating, toileting, walking. Sleeps more. However, there are days when she is surprising alert and strong.
• November 2005 – mom sleeping more and mobility is limited.
• 2006-2008 in general – mom continues to sleep more and need more assistance. Needs help to eat meals, move, needs adult diapers. Eventually needs to be in wheelchair at all times. Speech becomes infrequent and eventually becomes one word answers when prompted. Hands become curled up. At times, she appears to be zoned out and some tears roll out (although tears could be that she has a bit of a cold). We’re not certain that she can understand when we speak to her.
• November 2006 – mom is admitted to hospital for dehydration. Mom stays overnight and is re-hydrated and doing much better. She returns to the home the next day.
• Sept 2007 – mom suffers a mild seizure in the morning and is admitted to hospital for review. No evidence of a stroke is present. Hospital offers to run more intrusive testing but children decline the testing. Mom returns to the home later that day.
• May 2008 – mom sleeps much more and is very groggy when awake. There are some days when she has a few moments when she is more alert. The children hire a personal careworker in late 2007 and she works with mom everyday for 2 hours. She talks to mom all the time and takes her outside on nice days. Mid-month, mom has a small blood-bruise on her heel from pressure. It is monitored and rotated regularly and she wears soft booties instead of shoes.
• May 23, 2008 – citygirl visits mom in the evening for approximately 1 hour immediately after mom’s dinner. Mom sleeps through the visit, which is quite the norm now, with the exception of 1 minute where she opens her eyes and tells citygirl something jumbled. Her eyes look very nice and alert when they are open.
• June 1, 2008 – Siblings 1 & 2 visit mom in the afternoon and report that she was no different than usual days lately. Personal careworker reports the same.
• June 2, 2008 – mom peacefully passes away in her sleep overnight. Caregivers discover this on morning rounds at 6am. Children are called. Mom does not appear to have struggled at all – looks like she was just sleeping in her bed.
So there you have it. 16 years in one entry.
I want to tell other families out there something rather blunt: you will survive. I know somedays you think it just can't get worse and it DOES. Every step hurts. Every decline seems horrible but then you get used to the operating level...it almost becomes normal. When you start out on the Alzheimers journey and read things like this entry, I know you are freaking out. I know you can't possibly imagine your parent becoming sicker & sicker. But it happens and when it does, you survive. It's important to reach out to family, friends, support groups, internet..whatever you have.
I know in the early days, when I thought about my mom becoming incontinent, bedridden and unable to communicate, I just about wanted to die. But I didn't. And here I am ~ after the storm and still alive.