How to maintain feeling respected, worthy and needed?

This is a tough one because my husband has become a flight risk and wants to just wander. I have to keep the doors locked from the inside and hide all the keys to our house, cars, storage house, etc. This makes him feel like he is in a prison. He even told a friend, "I am in jail now." I also feel like I am confined as well, so I understand what he is implying, but for him to stay at home, there is no other option. This is not easy, but to survive I have to find ways to make him feel important and needed. I try to look for small things to point out to him that are helpful throughout the day such as when he helps with dishes or runs the vacuum- even if it is something I have to do again - I let him know that I can't do this without him. If he changes clothes 5 x a day (he has lost so much weight that he sometimes puts on my t-shirts or jeans ) I still tell him how amazing he looks. I call people and ask them to call him with questions about the yard, or flying, or money, or faith, and he feels good that he can help someone even though he usually has no idea what he just talked about. We have a helper 4 days a week and they go out to eat, ride to the airport, run errands, etc. Hubby has been told that we are helping "Mike" and that makes him happy to see him. When we get in bed I make sure to tell him how wonderful our day has been, thank him for his help, and that I look forward to another great day (many days are not truly great..in fact some are nightmares but I try to end on a positive note).
It is not easy to be a caregiver of someone with Lewy Body Dementia/ Parkinsonism/ and possibly alzheimers...but it must be much tougher to be the person living with this diagnosis. Finding ways to encourage, uplift, and inspire are difficult but can be done with just a little bit of creativity and TONS of patience! Good luck and may God bless and inspire you.

This is a tough one because my husband has become a flight risk and wants to just wander. I have to keep the doors locked from the inside and hide all the keys to our house, cars, storage house, etc. This makes him feel like he is in a prison. He even told a friend, "I am in jail now." I also feel like I am confined as well, so I understand what he is implying, but for him to stay at home, there is no other option. This is not easy, but to survive I have to find ways to make him feel important and needed. I try to look for small things to point out to him that are helpful throughout the day such as when he helps with dishes or runs the vacuum- even if it is something I have to do again - I let him know that I can't do this without him. If he changes clothes 5 x a day (he has lost so much weight that he sometimes puts on my t-shirts or jeans ) I still tell him how amazing he looks. I call people and ask them to call him with questions about the yard, or flying, or money, or faith, and he feels good that he can help someone even though he usually has no idea what he just talked about. We have a helper 4 days a week and they go out to eat, ride to the airport, run errands, etc. Hubby has been told that we are helping "Mike" and that makes him happy to see him. When we get in bed I make sure to tell him how wonderful our day has been, thank him for his help, and that I look forward to another great day (many days are not truly great..in fact some are nightmares but I try to end on a positive note).
It is not easy to be a caregiver of someone with Lewy Body Dementia/ Parkinsonism/ and possibly alzheimers...but it must be much tougher to be the person living with this diagnosis. Finding ways to encourage, uplift, and inspire are difficult but can be done with just a little bit of creativity and TONS of patience! Good luck and may God bless and inspire you.

Thank you. I needed this post right now. My husband's Lewy Body Dementia has progressed to the point where his short-term memory is barely there. He also has issues processing what he sees even though he has 20/20 vision (it's visual brain dysfunction). And he has difficulty processing what he hears and trouble expressing his thoughts. His execution functions are practically all gone as well. He has Capgras syndrome with many mild (for now) delusions / hallucinations. His neurologist says he is maxed out on the cognitive and delusion / hallucination medicines: 25mg Seroquel (quetiapine), 34mg Nuplazid and 33mg Rivastigmine patch as well as 50mg carbido/levodopa (he has bilateral hand tremors). Increasing or adding any of the cognitive or carbido/levodopa would/could increase the delusions/hallucinations and/or possibly make them dangerous.

I think all of your suggestions, especially compliments and thanks from me will go a long way to easing both his and my anxiety.

So, thank you for your post.

Thank you for all the details about your husband's symptoms. Our spouses share many of the same symptoms, so I know you are traveling a tough journey...just like so many others in this group. This constant source of knowledge that is not found in textbooks or even in research studies has been invaluable for all of us. Perhaps the best part is knowing that at any time of the day, we can share our hopes, frustrations, fears, successes and failures and find acceptance along with practical, helpful information. I am grateful for this group.

Thank you. I needed this post right now. My husband's Lewy Body Dementia has progressed to the point where his short-term memory is barely there. He also has issues processing what he sees even though he has 20/20 vision (it's visual brain dysfunction). And he has difficulty processing what he hears and trouble expressing his thoughts. His execution functions are practically all gone as well. He has Capgras syndrome with many mild (for now) delusions / hallucinations. His neurologist says he is maxed out on the cognitive and delusion / hallucination medicines: 25mg Seroquel (quetiapine), 34mg Nuplazid and 33mg Rivastigmine patch as well as 50mg carbido/levodopa (he has bilateral hand tremors). Increasing or adding any of the cognitive or carbido/levodopa would/could increase the delusions/hallucinations and/or possibly make them dangerous.

I think all of your suggestions, especially compliments and thanks from me will go a long way to easing both his and my anxiety.

So, thank you for your post.

@lena0825 My husband appears to be at the exact same stage as yours - even the medications & dosages. Neurologist had explained it would reach this point eventually.

All we can really do is stay in the moment with them & make those moments as loving, beautiful & peaceful as possible for ourselves & them.

Amen. That's what my husband's neurologist said as well. Our adult kids won't believe that, especially our daughter. She thinks there must be "something" that would "fix" it. But we caregivers eventually realize there is no "fixing" this.

Love your last sentence. It reminds me of the line in a song from the 70s (or earlier): "Yesterday's gone, tomorrow may never come, we have this moment today." Another line: "Don't wait for tomorrow to look back and wish for this day."

On a lighter note, with his poor memory, everyday is like the Goundhog Day movie. But at least we have "todays" for now.

Again, thanks.