Hi, everyone.
What a busy two months! ALS and FTD are becoming more and more difficult, yet we have had some wonderful experiences and created many lovely memories.
In my most recent journal entry (“Experiencing Bucket List Items and Enjoying Family”), I shared many experiences. Several of you did not get to read it due to the former website shutting down. I encourage you to read it now.
Speaking of websites, welcome to our new location (www.philsjourney.online)! I appreciate my children’s efforts in developing this site via WordPress and want to personally offer my “shout out” to them. I ask you to bear with me as I am still learning the nuances of this website. Meanwhile, you may want to click the Blog tab to view previous journal entries from the former site. Each journal entry requires the password Dan!el31718 to gain access.
This summer has been quite full. Phil’s family enjoyed the annual Morton Family Reunion, located at Lakeview Park in Lorain. The theme was “When it rains, it pours,” and we all loved it. We indulged in many tasty treats, including cookies that formed a Monopoly board. It was a beautiful day, and Phil got to try out his power wheelchair at the park. And we celebrated Phil’s 62nd birthday on Friday, August 16th with friends and family.
In-home health care therapy did resume after Phil’s powered/motorized wheelchair arrived. The OT, PT, and nursing staff from Cleveland Clinic Homecare services were amazing! They provided exercises that made sense for Phil to do. Each worker was extremely kind and most enjoyable. We utilized these services for about 5 weeks, and then Phil was discharged on Thursday, August 15th.
Again, while I do try to keep a cheery attitude, this is not easy. We encounter new challenges each day. Phil is tired all the time; whether we have a full schedule or a restful day, he is constantly fatigued and worn out. The FTD increasingly brings added difficulties.
Something that is weighty and glaringly awaiting us are the decisions regarding care when I can no longer keep Phil safely at home. I recently met with our attorney to discuss “next steps” for moving Phil into a long-term care facility, when the time comes. In order to make sure I am not misunderstood, please know this is not something taken lightly or happening in the immediate future; we are working to prepare ourselves. We appreciate your kindness and prayers as we navigate this part of Phil’s journey.
Our next big appointment is in mid-September, when he’ll see seven specialists at the Cleveland Clinic Downtown. This will be a big day and very tiring for Phil; however, we are looking forward to seeing them.
We are so thankful for our friends and are especially grateful to those of you who continue to help us. Many have stayed with Phil so I can run errands and keep appointments of my own. I would appreciate more people intentionally coming to spend time with Phil. Please reach out and schedule with me. While he doesn’t speak much during these visits, he truly appreciates the company and kindness extended to him.
Thank you again for living life with us through Phil’s journey.
We love you.
5 responses to “WordPress Initial Entry”
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I am so happy to catch up with Phil’s journey – grateful you have a new platform. So much news to read about – a new grandaughter, a trip to California. the COSI visit (the picture is great!). Thank you for sharing….you are both remarkable!
What a great photo!
Love you both.
Sheila,
Thanks so much for your realistic, balanced sharing. It makes me want to pray even more for the two of you. At the same time, I am encouraged by your authenticity. You are setting an inspirational and constructive example for all of us. We love you and Phil very much.
Esther and Bob
Hi Phil & Sheila,
Thank you for sharing this part of your story with us. You continue to be a testimony of living life, even now, as children of your Heavenly Father.
Truly you are living out what a “calling” is about. We highly respect you, your marriage, your love, your realism, your faith, and your insightful decisions.
Praying for Jesus to be your strong tower, where you run to and are safe.
We love you dearly,