I’m posting this update on Phyl (and me too) to my blog page because I have a feeling it is going to be a long one and it will be easier to read this way. This also lets me include a few photos. Only those folks with the password will be able to see this post.
It is the end of July and we are doing pretty well in spite of the challenges – and perhaps because of the blessings associated with ALS. Yes… there are blessings. The last time I wrote it was shortly after the Walk-a-thon fundraiser, where Phyl was the second highest fundraiser for the second year in a row (the top guy “went corporate” and got big donations – Phyl only went to family and friends)! She felt pretty good about this! Thanks to everyone who donated and/or walked with us!
Since then we have kept things pretty simple and established a daily routine of care, broken up by a few wonderful weekends with family visits. To give you a sense of what its like at 123 Harlow Dr. here is an outline of a typical day.
I get up early and get my own breakfast, read the newspaper (mostly about the Red Sox), check in on my online classes (it helps pay the bills), and then sometime around 9:00am I hear a bell calling me (Phyl has a button she presses) and our day together begins.
We start with a bathroom visit, which is no longer easy as it requires a transfer to her power wheelchair and back again. Some days there is a shower and thank goodness she can roll in using a specially designed shower chair. She gets “stretched” on the bed to keep her muscles from tightening up. I help her get dressed and we fight over what she will have for breakfast. She has never been a big breakfast eater, but if we don’t get enough food in her she will continue to lose weight (this is a real problem as it makes the muscles she has working even weaker). She will often have breakfast on our deck and read the paper… and then the fun begins.
Almost every day Phyl has some activity planned with friends. They may go shopping, to the movies, or take her power wheelchair on an accessible nature walk. Her friends may also be recruited to do some gardening (under Phyl’s direction, they will weed and water… and sometimes plant new flowers). Phyl loves her gardens and they look great thanks to the gardening volunteers. If she is not going out to lunch with a friend, we fight over lunch! We’ve gone to a liquid meal substitute lately which can be fed through her feeding tube directly into her stomach. Since she is rarely hungry in the middle of the day, this helps to get her calories and protein. She had her feeding tube (which dangled for 14 inches hanging out of her stomach) replaced with a small button which is low-profile and much less of an aggravation. It requires a bit of special care to keep clean but is worth it. This lets me give her medications and extra nutrition.
On days when there is nothing special planned, we will often sit on the back deck and read together. She and a friend might take Riley for a walk, either around the neighborhood in her power chair or in her golf cart in the fields near our house. I will work on dinner and either serve her on the deck or perhaps in front of the TV if the Red Sox game is on. She says I”m getting to be a good cook. I’m learning but don’t feel very accomplished yet! I am kind of enjoying the planning, shopping and cooking dinner since I”m not really working much now. In the Fall when I go back to work, the Meal Train organized by friends kicks in again and her network of friends will be delivering dinner two nights a week. This really helps!
The evenings are generally the Red Sox and a mini-series. Lately we have been watching McLeod’s Daughters which is about a cattle ranch in Australia run by a bunch of women. The good news is there were 8 seasons with 30+ episodes each. The bad news is that we are on Season 8. It keeps us occupied. Getting Phyl ready for bed is a complicated set of tasks that takes a while between the meds, bathroom dance, etc. She sleeps well all night with a respirator helping her to breathe evenly. It took us a while to work out the right respirator mask but we are doing well with it now.
I knew this would be a longish post…..
I asked Phyl this morning what she wanted me to tell you. The first thing that came to mind (because it is fresh in her mind) is that she has accepted being in the power wheelchair almost all day. In the past, we could transfer her from her mobility scooter (which she loved and had more of a motorcycle feel than a handicap chair feel) to a chair at the table to eat, the couch, and to the van. She is having difficulty holding herself up in a seated position and her legs are weak now so the power chair is getting a lot of use. Once I get her into the wheelchair she can zip around the house, go out on the deck, or around the block with friends. We recently got it set up so she can drive her chair right into the van and it locks in place while we travel. This is both upsetting, because it is yet one more example of the progressive nature of the disease, as well as satisfying because she can go places and still be comfortable in her chair. Everything we do seems to have both a challenge and a blessing.
Of course the disease continues to take things from her. Each week there is something new that she notices she can’t do that she could do in the recent past. So we adjust and accommodate. The feelings are mixed between sadness for what she has lost and gratitude for what we are able to do. Many people with ALS do not have the resources to do the things we can. Not all caregivers have as much flexibility in their work as I do with summers off. So we have a lot to be grateful for.
Speaking of work…. I told my department that I would retire next May. I need to be home and available for Phyl even though we also have aides coming into the house to help out. I’ll teach one class on campus in the fall and maybe one in the spring. Phyl has organized her friends to be with her while I’m teaching on Tuesday and Thursday afternoons. If you are local and want to sign up, check out Lotsa Helping Hands: https://my.lotsahelpinghands.com/community/phyls-helpers/home
As I said, this disease comes with challenges and blessings. The greatest blessing for Phyl has been the incredible network of friends who have shown up. Some garden, others go for lunch, and some just stop by to say hello on a regular basis. Folks who are not local call regularly to check in and chat. I told her recently that if we had to rely on my network of friends… we’d starve. She on the other hand has friends from high school, college, our Illinois days, and of course locally that continue to amaze us with their generosity (of time) and their love.
I’ve really got to end this soon….
Yesterday, my Facebook page popped up this picture from a bicycle trip we took in Colorado, 6 years ago.
We were really proud of ourselves that day! It was an optional part of a 5 day bike trip in the mountains in which we biked over a pass that most of the other folks decided to skip. Biking at 9000 feet was not easy but we were in great shape! We trained for this trip to celebrate our 40th wedding anniversary. Phyl was always up for a physical challenge (and I always struggled to keep up with her).
Today is no different. She now struggles with a physical challenge of a different sort. I am amazed each day how she gets up and pushes herself through the day. Sometimes the effort results in complete exhaustion. I can always tell because she gets really “heavy” on these days as I help transfer her from the chair to the toilet or bed. In the morning, her legs have some ability to help but by the end of the day, there is nothing left. And I won’t lie to you… sometimes there are tears. But the truth is that there are more smiles than tears.
We have no idea what the future will bring. She is on three experimental drugs and we will continue to have hope that a stem cell treatment will be approved that might stop the progression before her breathing becomes critical. But we know that ALS is a terminal disease. I feel fortunate that the progression has been slow. I’m told that 70% of the people diagnosed with this disease about the same time as Phyl have died. Perhaps the experimental drugs are making a difference. We just don’t know.
For now, we try to live one day at a time. And most days are pretty damn good – hard but good. And the best days are surely when Phyl gets to be with our grandchildren (three in the picture below and another due in November)! We are blessed to have all three sons and their families in New England. They visit us as often as they can, since it is not easy for us to travel. In fact, we hope to see them all in a few weeks as we have a house rented in Rhode Island near the beach again. The public beaches have these cool beach wheel chairs that can go right into the water and she will have our strong sons to help her get in and out!
I hope this paints a picture of what’s going on at 123 Harlow Dr. I know it isn’t easy to hear this stuff – but Phyl wants you to know – both the good and the bad. As always, she won’t look at my post to you but she knows I sent it. Please do continue to call and visit. She is willing to answer any questions about her condition so please don’t be afraid to ask. It actually helps her to talk about it but remember that some days she has difficulty talking due to lack of breath, so if you sense she is struggling please ask if she wants to continue. But do call as she needs to hear from you!
We laugh about this often…. our plan is to “just keep swimming”