Question H

[Jonetta]

Colonel Barrett, the father of the Barrett children, is confined to a nursing home, suffering from dementia. Grant has to adapt and learn a new way of communicating with him. Was this enlightening or consistent with your own personal experiences? Is it even more difficult for them as they had so few experiences with him growing up?

[Lauren]

This was really sad.
I've not personally had any experience with someone suffering from dementia, but my mom did have a stroke. Thankfully, it did not impair her cognitive abilities and had only a mild effect on her speech. Nevertheless, we all had to adapt to other physical limitations, and it was particularly frustrating for my mom who was a very active person.

[Christina T]

I agree it was sad. I've never had to deal with anyone with Dementia or Alzheimer's but know it's devastating to the individual and even more to the family.

I'm glad Grant was able to find someone to help him be with his dad at the end of the book. Her insight was right on. Even if his dad wasn't able to recognize his son him being there as a "volunteer" would give him some time with his dad.

[Lauren]

Christina T wrote: "Her insight was right on. Even if his dad wasn't able to recognize his son him being there as a "volunteer" would give him some time with his dad.."

Yes, this was wonderful advice.

[Robin]

It's very hard to have someone in your life with Dementia or Alzheimers. They become upset because they can't remember things or are very confused. It's very hard on the family, especially when they don't remember you. I've been through it with two grandparents and hope I don't have to go through it again someday.

I think the advice that was given to Grant was great advice. I also agree with him not telling his dad about Lee's death.

[Jonetta]

Alzheimer’s afflicted three of my aunts and uncle so I have first hand experience with this insidious disease. The advice given by the health care professional was so dead on. I just met my relatives wherever they were.

My Mom died of lung cancer in 2017 (she wasn’t a smoker). I spent the last year of her life taking care of her and a side effect is short term memory loss that worsens over time. The good news is that my mother was in excellent health otherwise at the time of her diagnosis so she was active and had great mental acuity going into it. As her memory worsened, we developed a process where she felt comfortable letting me assist her without seeming to do so. It worked for her because I met her where she asked me to be. It was heartbreaking at times but I loved that I could help her. She had tons of friends that came by and when she would start repeating herself, I would help move to another topic. It made her visitors less uncomfortable (they kept coming back!) and we had a lot of fun.

I asked this question because Grant’s experience brought back a rush of memories (good ones!) and I wondered if any of you had experienced the same.

[Anita]

I've known several people with Alzheimer's and with each one of them knowing me or not was a visit by visit thing. I just went with it and let the person set to tone for the visit. Sometimes we had great discussions and sometimes it was vague and general. I never got upset that they didn't know me and I didn't take it personally. Lee read to his dad and connected with him that way. I would read, sing or tell funny stories about my girls to entertain.

[Jonetta]

You’re right about it can never be about you, nor should you feel bad when they don’t always remember you.

[Sharon]

My mother had dementia that made visiting her difficult near the end. She always knew me, but she seemed to be in a different time with every visit. For example, one time, she wanted to know when my baby was due. My baby was sixteen years old. Another time she told me to contact my grandfather and remind him that he was going to walk me down the aisle. I was married almost twenty years at that time.

The worse visit was the second time I went to the nursing home. She blamed me for abandoning her, and putting her away "to rot alone." I cried for days.

The people at the nursing home were great. They told me to go with the flow after my second visit, because I was so upset. It helps when the staff are so helpful.

[Jonetta]

Thanks for sharing that, Sharon. I know of your experience.

[Karen ♐]

Thankfully, I haven't had a loved one with this horrible disease. The only instance I can relate to is when my Mom was in ICU with pancreatic cancer, she started talking about our appointment to get our nails and hair done. I was so surprised because even at 75, she had no mental issues at all. Had a great memory, etc. The doctor saw me and came up behind me and said just go along with what she's telling you. It turned out great, she calmed down and later he told me that ICU is very difficult for patients because it never shuts down, lights are always on and the noise from the machines and people talking all the time.

[Jonetta]

ICU can be extremely disorienting. I’m not surprised your mother experienced this, Karen.

[Karen ♐]

It was the first time a member of our family was in ICU. I never knew that could happen.

[Jonetta]

Unfortunately, I've been there much too often. It's busy and machines making all kinds of noises. The critical care staff has to monitor them continuously so there's always a lot of people around. I slept overnight once in my Mom's room (her request) and it was impossible to rest.

[Charlene]

Many of you know my husband has had Alzheimer's for thirteen years and has been in care for one year and a half. With the pandemic, I had gone more than four months without seeing him, but I call nearly every day and speak to him on the aide's phone.
Trouble is, he is almost non-verbal now and often doesn't know who I am.

Now I can see him 10-15 min once per week, with masks on, seated about ten feet apart. Only once so far did I know the real Dave recognized me. I hope to have a repeat soon, but I will take what I can. It is horrible to see a chemistry professor, who said he talked for a living (!), fail to know his children and grandchildren, who is disappearing slowly but who has no other health issues.

I am hoping one day soon I can go to his room, put on some music, and just visit with him.

[Jonetta]

It’s an insidious disease, Charlene. I wondered how you were faring in the midst of the pandemic, which just makes it more heartbreaking. Thanks for sharing with us and I’ll keep you in my prayers.

[Sharon]

Charlene what a horrible disease. I will pray that you get your visit with music soon.

[Karen ♐]

Charlene, my heart breaks for you. My thoughts and prayers are with you and your husband.

[Charlene]

Thanks, all. Sometimes it's so discouraging I just sit and stare; if I cannot read a book, I know I'm down, but not dangerously so. I do
hope I can share some of his favorite music with him soon; he was a really good trombonist and a singer with nice bass voice. Music is
one of the last things to go; he can only listen now, but that's a blessing I hope to share before it's also gone!

Your prayers mean a lot.

[Lauren]

I'm so sorry, Charlene. This awful pandemic is adding hardship upon hardship.
Please take care!