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Photo of Staying hopeful in the face of dementia
Each day, Baycrest sees to the needs of older adults living with cognitive impairments in the community as well as the 1,100 who call Baycrest home. Essential to the care of that vulnerable population is the work of its dedicated caregivers. The following are two stories about how Baycrest works to ensure all caregivers receive the support they need.

Lisa Raitt – Staying hopeful in the face of dementia
[Note: The following is excerpted from a November 24, 2021, Facebook post by Lisa Raitt, reprinted with her permission. It details the last two years of her life caregiving for her husband, Bruce, who’s battling Early Onset Alzheimer’s Disease. It has been edited for space and clarity.]

Bruce started having hallucinations and delusions in fall 2019. In the beginning, it was him suddenly not recognizing who I was. These moments would happen at least twice a week. Sometimes it would pass quickly and someti­­mes he forced me to leave the house.

Next was him just being angry and aggressive. Unbridled fury at people. He threatened my parents and they had to leave the house. He told my son Billy he was going to kill him and chased him. I took the knives out of the house.

Spring 2020 brought Bruce seeing his reflection and thinking that it was a friend. We witnessed lashing out again, holes in walls and dents in doors and cars. He confronted us with words and threats and physical intimidation but never personal violence. Often he just decided he was leaving. He wanted to “go home.” He would pack up his truck with an odd collection of items  and we would be terrified that he was going to find the keys and drive; and also terrified of what he would do if we didn’t give him the keys. I made my first 911 call in May 2020. Bruce was brought to the hospital and discharged into my care.

Summer 2020, I joined a support group and learned so much. First, I wasn’t alone. Second, that I needed to protect myself and my boys; and finally, that talking about this was incredibly helpful. I started virtual care for Bruce with a Baycrest neurologist [who] gave us some prescriptions to help with the delusions and hallucinations.

Fall 2020, sleep became elusive for Bruce. He would be up all night wandering the house and I would wake up in fear that he would fall or walk out the door. I childproofed the doors and watched him on the cameras I had installed in the house. No one was sleeping. Billy moved his bedroom to the basement because Bruce would go into his room at night and disturb him.

In October 2020, Bruce went from being physically threatening to being physical with me. He threatened his caregivers and they were afraid but they stuck with us, and I can’t thank them enough.

In November 2020, I decorated the house for Christmas. One night Bruce just started smashing glass ornaments. The meds caused him to lean to one side and become unsteady. He started to fall at night and started peeing anywhere he wanted to. Still no sleep.

Bruce needed overnight care, I wasn’t sleeping and it was beginning to catch up with me. We had four [LHIN-provided] caregivers come through in succession [but] they never returned a second night. By At Christmas 2020, he shoved and threatened his caregiver, he threw a punch at me… and he tried to kick our family pet Ruby. We made it to New Year’s Eve and had a wonderful evening with our neighbours around a fire. He was quiet but he was there.

On January 1, 2021, Bruce tried to put me through a window in our house. Billy came to intervene and I called 911. Bruce has been in the hospital ever since.

From January to September 2021, the wonderful staff at Baycrest Hospital’s Behavioural Neurology Unit helped wean Bruce from his cocktail of meds and then supported him with new care protocols. He was glazed eyed and incoherent and then he became alert, recognized me and could say “I love you.” He resisted showers and having his blood taken but the hallucinations, delusions and physical violence were gone. He took part in dancing and played a little putting game with me.

Then, Bruce started to slip again. He would mutter to himself and curse. He kicked chairs and just seemed so angry. He sobbed when he saw me and couldn’t control his emotions. It was heartbreaking.

I hate this disease with a passion. Just when you think you are on a flat path and have some hope of good days, Alzheimer’s comes back with a vengeance, to remind you that you have zero control.

I know all is not lost. I know his doctor says this is about finding what works for Bruce and we will continue to work on it. But I’m so, so tired of battling this beast.

In the hall at Baycrest, I passed a woman who was wheeling a man in a chair and I guessed that it was her husband and that he also had Alzheimer’s. As she went by she said: “I read your posts and they help me.” I don’t know whether [my story] helps. Maybe you see yourself in it now, or you experienced it already or you are a couple of years away from heading down the same path. Just know that this is a marathon and not a sprint. Find help along the way and understand that you can’t do everything yourself.

With the bad comes the good. I love my Bruce dearly and every moment I have with him is a blessing. For maybe 20 minutes a visit, two times a week he is “there” with me. And that’s what keeps me going.
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