I recently wrote an article for the Newberg Graphic Insiders Column called Reminisce With Me. It offers suggestions on how to spend quality time with someone you love that lives with dementia.
Some of my favorite memories with my Gram were times that we sat together and looked through photos on my iPad. Sometimes they were family photos, sometimes they were a board on Pinterest that I created just for her (anyone who knew and loved Helen knows that the board featured all things Pink!) You should check it out…lots of beautiful pictures there!!
Feeling stuck trying to think of things to do with your loved one? You can find more ideas in my book “Bring Back the Fun”.
I recently authored an article with my Dad about living with Parkinson’s. You can find it here: Parkinson’s Article.
It’s been important to my Dad that he shares what it’s like to live with this disease. As his body and mind stop functioning as he’d like, he wants to make a difference by helping others to understand.
We also wrote a children’s book last year. You can find on Amazon.com at this link: Children’s Book.
Whichever you choose to read, I hope that you are able to learn something about this crazy disease that will help you to better understand your loved one with Parkinson’s.
Today I attended a Celebration of Life for our friend George. While he only attended Gentog for 6 months – and it’s been three years since he left our program, he made a definite impact. He was a professor by trade, and he brought that spirit to Gentog every day. He was our only participant that always wore a suit when he came. He often used our white board for creating his fun art – as you can see from the picture above. He occasionally put on a lecture about astronomy, which surprisingly many of our participants enjoyed. He was a special guy.
But today I spent a little while with his family and friends – the people that had loved him for many years BEFORE we knew him. One of his close friends asked me “Did you know him before Alzheimer’s?”, and I had to answer “No.” I enjoyed hearing the George stories – George as a true professor that inspired young minds, George as a Dad who taught his children many valuable life lessons, George as a husband who had a wife that truly adored him. It was fun to hear about George’s life.
I had a couple of revelations as I mingled today. One is that I knew George was a special guy, before I heard these stories. I may never have known him without the cloud of Alzheimer’s, but his spirit always showed through. I knew that he had to be a pretty cool guy because I’ve become friends with the wife he loved and the children he raised.
I also learned today that the service we provide at Gentog has many layers. We absolutely create a place where someone with Alzheimer’s can come and be accepted and celebrated for who they are today. We also create a community where families can get to know each other. Two of the people at the celebration today were wives of Gentog participants that have passed away – and they’ve stayed connected with George’s wife for these three years, after meeting and bonding here. We create a support system, a community, a family.
Caregiving is often thought to be the hardest job there is…and that is true. But there can be moments of joy, happy times and even a little fun. Read my article in the Regal Courier.
“One is the loneliest number that you’ll ever do.
Two can be as bad as one,
It’s the loneliest number since the number one.”
Remember those lyrics from the Three Dog Night song? OK, I’m dating myself…but I loved this song when I was a teenager! I can still hear it in my head. Little did I know how true the words would be.
If you are a family caregiver, you can probably relate to the theme. Life can become so very lonely – even when you are together in a house with the man you have loved forever. When a disease or condition takes over – Alzheimer’s, Parkinson’s, stroke, or MS – your life can change dramatically. Once upon a time you enjoyed going for walks together, working on projects together, going golfing with your friends, travelling, book clubs, Bible studies, volunteering, attending church, going out to dinner, etc. Now your world revolves around his “condition”. Your outings are mostly limited to visits to the doctor or the grocery store. Friends stop calling to invite you to events because they know you’ll say no. You stop planning outings because it’s just so darned hard to get both of you ready and out the door, that it doesn’t feel worth the trouble.
Unless you have truly reached the end of life – a few days/weeks from his last breath – this is NOT the life you should be leading! There are alternatives. While you may not recapture exactly what your life used to be, you can certainly build a new reality that is peaceful and happy. You can make some compromises and get back to a balance that is good for both of you.
Providing care to your spouse is an act of love and sacrifice. It does not, however, need to be 24 hours per day, every day, to be a true act of love. You can – and should – find time to replenish your soul. If you never take time for you, there will be nothing left of you to give. Your tenderness, your kindness, your love will begin to lose the battle to impatience and resentment. Without intending to, you’ll stop providing loving care and begin to feel burdened. And he will sense that. Neither of you will be happy.
Finding an alternative for even just a few hours a week will make a difference. Studies show that caregivers need at LEAST 4 hours per week to do something that they enjoy – that will truly replenish their spirit – in order to stay healthy. So how can you find that time? Get creative!
- Start with family. Ask your children to come to visit Dad so you can get away for a few hours. They might surprise you and say yes!
- Ask your friends. Maybe your best friend’s husband would enjoy visiting with your husband while the two of you go to a movie.
- Find a professional. In-Home Care Agencies abound…find one that you trust and make arrangements for a regular caregiver to come in and allow you to go out.
- Find an Adult Day Program. While you enjoy your time out, your spouse can actually enjoy making new friends, participating in meaningful activities, exercising, lunching with pals. BOTH of you could enjoy a few hours apart. Imagine how pleasant the evening could be after a day like that.
OK, you’ve figured out how to carve a little time for yourself. Now use it wisely. Yes, you have appointments of your own to keep (when was the last time you went to the dentist, by the way?). Yes, the grocery shopping needs to be done and it WOULD be easier if you could do it by yourself. But don’t forget that what you also need are activities to replenish your soul. Consider some of these:
- Attend a club meeting that you used to enjoy – Reading Club, Knitting Club, Bible Study…
- Go for a long walk in the park. Stop and smell those roses that are blooming early this year.
- Go for a swim…yes, the pool is still over there!
- Go golfing with your friends.
- Go shopping just to shop…at the mall…make sure it includes a stop at See’s Candy.
- Go for a drive in the country. Stop at the fruit stand and get those fresh berries.
- Take a painting class (did you know you can attend a painting class where they serve wine?!? How wonderful is that?)
- Go to church.
- Have lunch with your friends.
- Go see the latest chick flick. Nobody will judge.
- Spend an afternoon in fabric store and touch every single bolt of fabric. (Or is that just me?)
- The point is to do what will make YOU happy for these 4 hours.
Promise me you’ll try this week. Try to find some time for YOU. Both of you will benefit.
If you’re looking for a great place for your loved one to spend time while you take time for you…check out the program at Gentog. We’re here for you!!
You’ll learn in my April article for the Regal Courier just how powerful the words “I’m Sorry” can be!
We’ve always known it. Play is good for young and old. Children learn new skills, Seniors practice old skills. Both enjoy the exercise benefits and have fun. Both practice problem solving. Both laugh. You don’t have to study this to know it’s good and it’s right.
But if you DO need to study this. If you’d like a little scientific evidence that intergenerational play is good for both groups, then you might enjoy the following publication from Generations United (gu.org). www.bit.ly/Playisgood.
Happy reading. And when you’re done…go find someone and toss around a balloon. You’ll feel better, I promise!!
Social networks like Facebook can be valuable tools when caring for someone you love. Find out how I use Facebook as a caregiver in my March article in the Regal Courier.