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You’ll try to keep your loved one home as long as you can. Personal stories from the frontlines, plus advice.

5 Lessons in Double Duty Caregiving

5 Lessons in Double Duty Caregiving

by SHARON PENROSE

When my mom was diagnosed with dementia, she had “memory problems.”

We could never say the word “dementia”. As a nurse, the roles of professional and family caregiver inevitably, sadly, get complicated when your parents’ health declines. I want to share some of the important lessons I learned on this journey.

1. Always check what medications your parents are on, and when they are taking them.

My mother was a banker. She could add up a string of numbers in her head faster than you could write them down. When the gerontologist first noted her declining math skills, he prescribed a medication. She improved considerably, but over Christmas became easily confused, forgetful and upset. I didn’t realize that when her follow up appointment had been rescheduled, she had run out of medication and she didn’t take any for a full month. We got her back on track, but it wasn’t our best Christmas.

2. Don’t be hard on yourself because you didn’t see things changing. Parents want to stay independent and often try to protect their children.

My parents managed fairly well on their own for a few years, and still took vacations. When my dad needed bypass surgery, Mom wanted to stay in the hospital residence. I arrived to visit one day, and she had left to get some things from her room. When I went to find her, I saw her try every hallway until she found the elevators. I caught up to her on her floor, where she had been searching for her room in the wrong direction. It was very distressing to witness the decline I had been expecting — but because they were so independent I really hadn’t seen the gradual progression. Or, in retrospect, I may have been blind to it.

3. You have to use your imagination to support a parent with dementia.

Dad recovered, but Mom continued to decline. She had been paying the bills, but now she was paying for hydro twice and not the phone bill. She was also becoming incontinent. I am a nurse continence advisor, and made the frustrating discovery that I could not just “fix” my Mom. I arranged for the proper supplies but my dad told me she wasn’t using them. I finally figured out that she thought they were too expensive, so she was making do with maxi pads while my poor dad was doing daily laundry of wet sheets and clothes. When my dad started getting a pension, we told her the money was for her continence pads. That did the trick.

4. You know your parent better than anyone. Trust your gut.

Mom often said to Dad after dinner, “You cooked – I will do the dishes.” Then she wouldn’t leave the table, and my dad would eventually get up in a huff and wash the dishes himself. ”Your dad is always mad at me. I don’t know what I am doing wrong,” Mom would say. I tried to explain to my dad that she wanted to do the dishes, but would forget. I took a Montessori Approach for Dementia Care program. It was invaluable as a tool to help my parents, and now for my clients.

I learned that if Dad had given her a physical cue – like handing her the dish towel – she would have gotten up and done the dishes. It would have alleviated a lot of stress for both of them.

I started visiting daily to help her take a bath, or just to keep the peace. One day my dad called to tell me that Mom had collapsed twice. She spent two weeks in the hospital, but did not get out of bed unless I got her up. She was admitted to a long term care facility, but she continued to be confined to her bed or a wheelchair. I used my Montessori knowledge to get Mom up and moving. I also found a wonderful physiotherapy assistant who would help with mobility in her spare time.

5. Don’t dwell on the disease. Value the moments, the pearls of wisdom, their smile and humour.

Focus on their strengths. Mom and I baked, knitted, walked, drove and laughed.

Mom was transferred to another facility where she thrived. She walked to the dining room with a walker. If she fell, the staff picked her up and had her walking again.

She needed new summer clothes, so I came one evening and asked if she wanted to give a fashion show. She agreed, and stood up and sat down numerous times to try everything on. We laughed all evening. When someone came in to see what was so funny, Mom said, “the Sergeant Major is back and I have a new wardrobe!” Another time, I took her out on a hot summer day and asked if she wanted an ice cream cone. She was wearing half of it because of the heat! We laughed that she wouldn’t be allowed out with me again if she came back in such a mess.

She continued to decline, and so did my dad. We took her to the hospital to see him and say goodbye, but I am not sure she understood how ill he was. When he passed away, she said, ”that wasn’t supposed to happen.”

At that point she was in a wheelchair full time and needed assistance to transfer. Some days she would eat, and others she needed to be fed. I saw her before travelling to BC for my daughter’s baby shower. She was not very clear that day, and would only take a few sips of juice. She said, ”what would you do without me?” and I replied, “I would miss you but I would be okay.” The nursing home staff called when I was away to let me know that Mom had taken a turn for the worse. She passed away three days after I got home, exactly four weeks after my Dad.

This is the longest funeral you will ever attend.

It was difficult to lose them so close together. I knew they were hanging on for each other.

My mother had dementia for about 15 years. Get involved. Create a memory book, a book of favourite recipes, look through family photo albums together. It’s an opportunity to say and do the things you mean to do, without taking time for granted.

I encourage you to share your stories too. Everyone learns something new along this journey.

I love you Mom. Thank you for being a great mother.

To see the original article, go to http://www.saintelizabeth.com/Caring-for-Family/Caregiver-Blog/January-2014/5-lessons-in-double-duty-caregiving-A-nurse-and-da.aspx

Saint Elizabeth services and programs are available in four provinces in Canada. To contact Saint Elizabeth for home or health care, go to: http://www.saintelizabeth.com

Reprinted with permission of Saint Elizabeth Health Care.


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