From son to caregiver

Jeff Marier, Active member of the Alzheimer’s Society of Ottawa and Renfrew County

In 2005, I broke my leg. At that time I was sharing a house with my mother, Mary. I had moved back home 15 years prior to that, after my father had his third heart attack. In 1992, my father died from his fourth heart attack, after which mom and I agreed that perhaps it was best for me to stay.

As an only child, with no spouse or kids, it was an easy decision. Mom could not manage the house by herself, and I was fully prepared to take care of the maintenance projects while she took care of the cooking, cleaning and laundry.

This arrangement worked well for us both. We led independent lives, but often shared meals and holidays. During this time, I was travelling regularly for work, and mom would drive me to and from the airport as required. Mom travelled often with her seniors’ club, and went on bus tours with her sisters. We thought this arrangement would continue indefinitely.

I was stuck at home for 8 weeks after I broke my leg. Mom drove me to doctors’ appointments, and took care of the essentials during this period. However, I noticed that she often repeated the same stories to me, or asked the same questions, and there were also times when she seemed lost in the house.

About six months later, I was sitting in the waiting room of our family doctor when I noticed a pamphlet from the Alzheimer’s Society, which listed the symptoms of Alzheimer’s disease. To my dismay, I realized that mom was exhibiting several. I brought the pamphlet in with me, and I told the doctor I thought my mother might have this disease.

The doctor asked me if I knew that Ottawa had a world-renowned memory clinic, but of course this was news to me. He went on to say that the Memory Disorder Clinic at the Élisabeth Bruyère Hospital was the best place to refer mom for a confirmation of my suspicions. About three months later we had our initial appointment.

During the preliminary testing, I realized mom was having obvious memory issues. Afterward, the nurse who conducted the tests took me aside, and she said that while she could not confirm that mom had Alzheimer’s, she felt it was a strong possibility. She gave me the phone number for the Alzheimer’s Society of Ottawa and Renfrew County, and she suggested I contact this organization.

After the appointment, I took mom out for lunch, and we had a long talk. She realized she had experienced some problems during the testing. I mentioned that we could talk to the people at the Alzheimer’s Society to find out more information, and she agreed. The next day, I made the call, and found out about the society’s Learning Series. I talked to mom about it, and she was keen to attend the next session, which we did. I advised my workplace of mom’s situation, and thankfully, my leave time was approved.

We completed the six-week First Steps course before mom was officially diagnosed with Alzheimer’s, and in many ways this was a good thing. It opened our eyes to what we were about to face. To this day, I don’t know how mom was able to maintain her composure when confronted with the fact that she has an incurable disease, which will rob her of her memories and eventually result in her death.

In late July 2006, mom was officially diagnosed and our journey began. The doctor told us he would be contacting the Ontario Ministry of Transport to have mom’s driver’s license revoked. This was terribly upsetting for both of us, as it changed the whole dynamic of our relationship; mom would soon be dependent on me for transportation.

The doctor also gave her a prescription for Exelon. Mom tolerated this drug well, although I noticed a drastic decrease in her appetite. However, we were advised that this was one of the side effects to this drug, and that it would likely correct itself over time.

When I phoned members of mom’s family to inform them of the diagnosis, I learned that one of her sisters had been diagnosed with Alzheimer’s a couple of years before, and she had reached the middle stage. We already knew that one of her brothers had a form of dementia when he died.

Based on the information from the Learning Series, I strongly suspect that my mom’s mother had dementia before she died. A year after mom’s diagnosis, her other sister was diagnosed with Alzheimer’s. Although this is not conclusive, it seems that my mom’s family is predisposed to this disease.

The Learning Series prompted us to make an appointment with our lawyer to make sure the wills and power-of-attorney documents were up-to-date. We felt that it was important to do this while mom was still legally capable of understanding the proceedings and signing the necessary documents.

In October 2006, we received notification that mom’s driver’s license had been revoked. Although we knew this was coming, it was still traumatic, especially for mom. My first task was to sell her car, which was accomplished by mid-November. Next, I informed my workplace that I would need additional time off to drive mom to various appointments and meetings. Luckily, there was never a problem getting the required leave.

We were now attending a monthly Alzheimer’s Support Group meeting, which helped us both cope with the new problems we faced, and prepared us for other difficulties we would eventually encounter. It was comforting to know I was not alone on this journey. It was also a blessing to be able to ask questions about situations I was experiencing, and learning about how others coped with similar events.

But there were some issues which were very specific to our situation. Most of the other group members were spouses looking after their partners, while I was a son caring for his mother. There were major role-reversal issues. Given her memory problems, mom thought she was still doing all of the housework, when in reality things were not getting done at all.

Because I was still working, it was difficult for me to take on extra household chores, but if I did, it seemed to hurt her feelings. If she saw me get out the vacuum cleaner, she thought she hadn’t done it properly.

Surprisingly, it was relatively easy for me to take over the cooking duties. I was able to gradually take over this chore, first by offering to help her prepare the meal. Other times I would convince her that she was tired after a busy day, and prepare the meal for her. Eventually meal planning and preparation became my responsibility, but I continue to involve her by getting her to peel vegetables and assist with the clean-up.

Doing the laundry was another issue. At first she refused to let me do it claiming that I was incapable of taking that on, and other times she complained that I was forcing her to do a chore she didn’t feel like doing. I couldn’t win! But I kept doing the laundry on my own, and eventually she accepted the fact that it had become my responsibility on a full-time basis. But in this instance as well, I continue to involve her by enlisting her help to fold. With supervision, mom can still do a better job at ironing than I ever could!

Some housekeeping chores fell by the wayside, right up to the time mom started attending a day program. Until then, the best I could do was to suggest that we do one small cleaning chore together every weekend. While not ideal, this got the basics done.

Once mom started attending a day program, I was able to hire a company to come clean the house on a monthly basis. To this day mom remains unaware that we have a cleaning service. I had to suppress a laugh when I heard her tell someone that she doesn’t have to clean the house often, because it doesn’t get that dirty!

The Alzheimer’s Support Group meetings are not only a great forum for sharing, but also a source of invaluable information on resources and programs, as well as information on how to access these. At one of the meetings in early 2007, there was a presentation by the Clinical Trials Unit of the Élisabeth Bruyère Hospital about a new trial for the drug Ebixa (Memantine). After the presentation, I told them that mom and I might be interested in participating.

Later, mom and I talked about the possibility of joining this drug trial, and we both agreed to give it a try. Given the fact that this disease seems to run in my mom’s family, we both felt that it would be worth the effort to help find a cure. We have hope that a new drug may help to reverse the damage caused by this disease, but for the time being, we would gladly settle for something that stops or at least slows down its progression. Realistically, I know that it might be too late for mom, but future generations may benefit from our participation in this trial.

In early 2009 I was able to retire from the National Research Council after over 35 years of service. Although I still enjoyed my job, the stress of looking after mom made retirement seem like a good option. Being a caregiver had become my full-time responsibility, and there was no time left for work or for myself for that matter. Already I was beginning to feel the effects of the stress I was under.

Once I retired, I was finally able to make sure that mom was eating properly. Over the three years since she was diagnosed, she had lost a lot of weight. I don’t know how many pounds she lost but she went down about 4 sizes. The problem was that while I was working I never knew if she was eating lunch. I tried my best to make sure she was eating breakfast and supper, but I was not always home at lunch time.

Soon I couldn’t help but feel more overwhelmed with my full-time caregiving job. At least when I went to work, I was getting a break from my responsibilities at home, but once I retired, I had no break at all.

It’s amazing how quickly one’s life can change when illness strikes. My routine of going to work was replaced by the daily task of looking after mom and catering to her every need. Each morning is the same whether it is a week day or the weekend. She always asks me the same questions: “What day is it? What do I do today? What colour do I wear?” She will ask those same questions over and over again – before, during and after breakfast. And breakfast is always the same – cereal, toast with jam and coffee.

A consistent routine is best for mom, because she can get very agitated when there is too much change. While routine is good for mom, it can be somewhat boring for me. But I learned early on that it is better for me to be bored than to deal with an upset mother.

We both agreed that she could not just sit around the house, and should remain active. However, I was finding it harder and harder to keep mom entertained every day. She was attending a seniors’ club several times a week, but I could tell she was getting less and less enjoyment from the activities she took part in. Because of the disease, mom gets easily confused, and of course this can lead to frustration. Sadly, a seniors’ club is ill-equipped to deal with sufferers of Alzheimer’s.

Luckily, our support group provided a solution. At one of the meetings, we were introduced to the concept of day programs specifically designed for people like mom. I was very enthusiastic about this, but mom was not entirely sold on the idea. She did not see any need to go to a day program; she had her seniors’ club after all.

I mentioned this reluctance to one of my contacts at the Alzheimer’s Society, and she invited us to attend a second monthly support meeting in September 2009 where mom and I met other caregivers and people with Alzheimer’s who attended an afternoon program at the Perley Hospital. The idea was to mingle with people who benefitted from the program in the hopes that others would also want to attend regularly.

This strategy peaked mom’s interest, and in February 2010, she started to attend the Perley day program every Wednesday. In August, she began attending the program on Mondays as well, and by June 2011, she was going 3 days per week. She continues to enjoy going, and I’m happy for her. Although I have to drive her there and back, I make the most of the 15 hours each week when I don’t have to worry about her. She enjoys the entertainment, the food and the care. When she gets home, she can’t recall what she did, but she remembers that she had fun, and that’s all that matters.

Eventually, a new day program began at the Perley Guest House, a twelve bedroom bungalow designed to provide short-term overnight respite for people with Alzheimer’s. All are encouraged to use this wonderful facility. While mom has not yet agreed to spend a night there, she has enjoyed several days in the new day program. In January 2012, she started going to the Guest House day program every Tuesday, and once she feels comfortable enough there, she may well agree to an overnight stay.

Over the last couple of years, I have become more involved with the Alzheimer’s Society. This group has helped my mom and me so much, that it seems only right to give back in any way I can. I have become my mom’s best advocate for more than five years now, and I don’t mind sharing my experience and all that I have learned with anyone going through a similar situation.

Below are my best tips, starting with the DOs:

  1. If you suspect that a loved one may have Alzheimer’s, talk to your doctor about having some tests done as soon as possible. Current medications work best in the early stages of the disease.
  2. Once a diagnosis has been confirmed, contact the Alzheimer’s Society, and register for the organization’s Learning Series. These meetings will help you understand what this disease is all about, and teach you coping strategies you would find most helpful.
  3. Attend Alzheimer’s Support Group meetings regularly. You will be overwhelmed by the changes you are going through, and you can benefit from hearing how other people are dealing with similar issues. You will feel much better knowing you are not alone on this journey, and you will meet new friends and contacts.
  4. Learn about the services and the many resources available to you. Remember that you are not Superman, and you need all the help you can get. Note that an assessment by the local Community Care Access Centre (CCAC) is required. Do this early on to avoid any delays in accessing services and programs.
  5. Keep in touch with your local Alzheimer’s chapter. If you have any questions or concerns, talk to anyone there. These individuals can direct you to the appropriate resource. In return, offer them whatever help you can provide by either sharing your story or contributing to fundraising events.
  6. Consider participating in a drug trial. I know, drug trials may not be for everyone as some require a huge commitment, and of course there can be some unwanted side effects. A typical drug trial lasts 18 months, and involves 25 to 30 appointments. Based on our personal experience, the benefits outweighed the risk of side effects.

I will close with a few DON’Ts:

  1. Don’t be embarrassed or ashamed. Your loved one has a disease, and there is no cause for shame. It’s not your loved one’s fault, and it’s not yours either.
  2. Don’t hide the diagnosis from friends and family. You will both need help and support. You may also need to help your family and friends adapt to the changes brought on by this disease.
  3. Don’t isolate yourself or your loved one. Stay involved with life. You should both participate in all the activities that you can, some together and some separately. It’s not always easy, but it’s important and beneficial to all concerned.
  4. Don’t exclude your loved one. Keep he or she involved in conversations as much as possible. Some sufferers may have trouble comprehending and expressing themselves, but they will appreciate the efforts you make to include them.
  5. Don’t treat your loved one like a child. Let your loved one feel that he or she still has some control, even though you will be making most of the decisions.
  6. Although difficult, avoid dwelling on the past or the future. Your loved one lives in the present only and his or her reality is very different from yours.

My mom will always be my number one priority, and as we continue on our journey, we try to capitalize on the many good moments, and there have been several. By making the most of each day, we know we have done our best, and we always look forward to what tomorrow may bring.