looking for some hearts and souls that understand

jen ht · October 10

Hello Dear Community,

Dad and I went to a neurologist appointment today to get him established with someone here after his move closer to me. You all have supported me through so much already. I thank you. It was our first time out together since his move here in late June. It was good to be out with him. I was so nervous about our return to his home in his MC Community. He is really hopeful about going home, but he is confused about where he is in relation to the home he wants to go to. I messaged ahead to the MC when we were on our way back to ask for help with my departure. He wanted me to take him to his house real quick so he could pick up his car and bring it to the MC parking lot so he could go home as soon as he is released. His house is over 1,000 miles away. That's what most of our conversations revolve around - planning and packing and where he'll go when he can drive home (bank, haircut, etc.) I just go with it now (that I've learned from you all here) and we plan aloud for his errand days together. This made it hard for my brain and my heart to leave him today. Maybe he will just go on planning and dreaming of better days? I can hope.

He introduced me to his new doctor today as his wife. Oh well. I am glad that he is happy when he sees me and that he knows that I love him. I'll take it and mark it in the win column.

All in all it went as well as it could at the appointment today. I hope to be able to take him out a bit now and then for short rides or an ice cream. I had hoped to do that sort of thing all along, but that was before I knew what I was getting into. Now I see that regularity and routine are keys for him and his brain change.

Now that it is evening and I am home, all of the emotions are catching up with me. So I came here to visit with you all for a little while. Other well meaning friends are quick to dismiss conversation about Dad. I am thankful that they ask me about him. I do notice, though, that they are quick to say something like "that's great that the appt went well" and then change the subject. I get that. I just want to linger with some good company here who get it. I will likely replay this day and how the appointment went for days.

I appreciate this space and you all so very much. Thank you for reading. Thank you for caring.

May we be well 💜 jht

fmb · October 10

We get it, jht. ((hug)) If it's any consolation, many PWD fixate on 'going home'. Often this means going back to an earlier time and place when they did not have dementia. A time when they were in familiar surroundings. A time when they were comfortable in their own brain and body. A time when they felt safe. Sadly, as the disease progresses there is no going back. For those who have taken their PWD to a previous home, the feeling of needing to 'go home' still exists. Home is a feeling, not a physical place.

howdoidothis · October 10

Im not at this stage with my mom, but maybe explain to him that home is wherever the two of you are together. That might calm him some.

H1235 · October 10

You both can enjoy time together. That is the most important thing. My MIL eventually didn’t know who I was, but always enjoyed our visits. My mom knows me but is always angry and I usually end up leaving the visits early. You can enjoy time together that is important. As long as his plans to go home are not causing anger and stress that is a big plus.

harshedbuzz · October 10

@jen ht

That sounds like a very full day emotionally. More so for you than dad.

If the planning and chatter about heading home keep him feeling positive and hopeful, I would accept that and maybe lean into it. Over time, his need to get home may lessen; my dad carried on about getting back to his home in FL until one afternoon when he asked me how my flight was when I stopped by. In his mind, he was in FL which worked well in terms of his mood.

For now, you could bring the treats to him for now. I always brought dad something when I visited— a good hot coffee and donut, a milk shake, soft pretzel, fast food lunch.

HB

jen ht · October 11

https://alzconnected.org/discussion/comment/225080#Comment_225080

Thank you so much @fmb ((hugs)) back.

jen ht · October 11

https://alzconnected.org/discussion/comment/225083#Comment_225083

Thank you @howdoidothis Sending you peace.

jen ht · October 11

https://alzconnected.org/discussion/comment/225093#Comment_225093

Thank you @H1235 It is good for me to know that even when he doesn't know me there is still the possibility of enjoyable visits. I appreciate these insights.

jen ht · October 11

https://alzconnected.org/discussion/comment/225096#Comment_225096

Thank you @harshedbuzz I hear you. Your subtle hint to not take him out (by bringing the treats to him instead)… I hear you and I know there's wisdom in your words and your experiences. I have been doing as you suggest. Sounds like it might be better for me to stick with this plan.

If you have the time, could you say a little more about this please? Is it to not upset his routines? I've struggled with knowing whether to take him out with me and how to provide some positive enrichment for him. You've worded this so well and I appreciate your kindness and insights. If you'd be willing to weigh in a bit more, I'd sure appreciate it.

At one point during our neurologist appointment it seemed like he was suggesting that dad might not be to the point of memory care yet. He uses the FAST scale with his patients. He placed Dad at 5 and suggested that I find ways to provide more activity and enrichment for Dad. So I was thinking small outings might provide that. I welcome your thoughts. I feel like I am trying to find my way in the dark here.

May we be well 💜

jen

nsglobe · October 11

https://alzconnected.org/discussion/70870/looking-for-some-hearts-and-souls-that-understand

Sending peace to you. When my grandmother was still with us, she didn't know who my mom or I was. We could not visit her together because she couldn't figure out how to fit us together in her mind. She thought my mom was her mom. I think she thought I was a cousin or close friend. When we visited together, it didn't make sense in her mind. Since I would call my mom, "Mom".

She loved our visits separately though. We didn't mind and kept separated for her.

Now, my mom is the PWD. She is recently diagnosed and not yet in MC. But, since we have experience, we are trying to do better. It is still a learning process. No two experiences are the same.

I think as long as the PWD isn't showing signs of elevated stress from what we are doing for their benefit (whether that be taking them on outings or bringing them food), we each have to find a path and adjust as necessary. The illness is ever changing.

looking for some hearts and souls that understand

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