Husband has Dementia, unknown origin as of now

Dear kind Dementia caregivers,
My dear 65 yo husband, has recently been diagnosed with Dementia with unknown (as of yet) origin. he has stated, in his confusion that he wants to return home, That home, is his childhood home to see parents and siblings. Parents are deceased years ago, siblings are long since moved into their adult family lives. How do I help my husband ? And comfort him?

I’m new to this connection with dear caregivers, but not naïve to devastating realties of dementia. I’m hopeful to hear from you , and to possibly support others. Blessings to you all.

Know that we will pray for you. It is very heartbreaking to experience. My youngest brother just passed @ 56 years young from frontal lobe dementia 01/27/2022.

Hello, @lrenee08 Good to have you here in the Caregivers discussion group on Mayo Connect. I found Connect while I was the sole caregiver for my wife during her 14+ years-long war with brain cancer, which brought with it many dementia-like symptoms. My MIL also passed from dementia and I worked for the national Alzheimer's Association for several years.

I know each of our patients, caregiving, and journeys are unique, so I did want to chime in and respond. Hopefully, some of my experiences might be of some help as so many of the demands of caregiving are the same no matter the disease our loved one is battling.

One thing I came to realize when a loved one has a damaged brain is that one of the first things to disappear is logical thinking abilities. My MIL lost her sense of time so she often would ask for people, places, etc. of times gone by. We often would simply initially agree with her and then alter the topic a bit, keeping the people, etc. but changing the topic to some other memories. Didn't work every time, but did quite often for us.

As to your comment about the unknown origin, I would say that quite possibly will never be known as they have yet to discover the origins and causes for these diseases.

Thanks for your empathy for others! It is critical for caregivers to know we aren't in this difficult role alone!

What might you have learned already that might help others?

Strength, Courage, & Peace

I’ve been told, “home” is not a place. It’s a feeling. Sometimes I say, we are staying here tonight. We will go tomorrow. Or , your parents are not there. They left you here with me so we could take care of each other. If he asks where his parents are, I tell him they are off an adventure or trip, looking up old friends and acquaintances, just seeing who they can find that they used to know. Sometimes , I can sit beside him, holding hands. Then when it’s time, I just say, “Come on, let’s go to bed” and he’s okay with that. I am not going to tell him every day that his parents are deceased. It’s too upsetting.

Hello Pattyinal .... I’m a caregiver for my husband who was diagnosed with MCI due Alzheimer’s Disease 3 yrs ago (although symptoms had appeared at least 5+ yrs ago). I’ve found advice and understanding from many sources, including here on Mayo Connect! I might also point you to a Facebook page called dementia_careblazers which is by Dr, Natali Edmonds. She has impressive credentials and experience. She also has a YouTube
Channel. These are free of charge, although she does offer courses for a fee. No pressure. She addresses ways to help when your loved one keeps saying s/he wants to go home. I think your responses seem perfect. Hope this information is helpful as several of us caregivers in our Mayo Habit support group have found her to be knowledgeable and helpful.

I have watched videos by Teepa Snow who teaches Positive Approach to Care. She has more knowledge and practical experience than anyone I've heard of. Look up teepasnow.com for books, videos and ways to contact her team. You should look for a group near you for support also. I am not the caregiver, my mom is 98 yrs old in assisted living, she wanted her own place. I do call, visit and take care of making sure she has her personal items.
God bless you,
Sue