Introductions: Are you caring for someone with dementia?

Thank you. It really helps to know I’m not alone. I do need to find something for me instead of doing for everyone else.

@dianajane My heart is breaking with yours. How hard this must be for you to arranging nursing home care. Is it near you? Will you be able to help manage his care there? I am wishing you strength and courage. This must be heart wrenching.

Oh my gosh! How valuable is this list! Thank you so much.

@debbraw Thank you. yes it is close to home. I will be able to visit 24 7, seems like a great place for his care. Safe, excellent staff, still Hospice will be visiting him and monitoring his health, etc. Will be an adjustment for both of us.

Hello. I am new to Mayo Clinic Connect and was thankful to find this group. I am the oldest daughter of my siblings who are all younger and I am the go to person for both of my parent's who are both in their 80's. Although they still live quit independently, their ongoing health issues and needs has made me realize I have moved into the next stage of my life to help them cope. About two years ago I started telling my siblings that something was wrong with dad's short term memory because he kept asking the same questions and he was getting short tempered at times. They don't spend as much time with my parent's as I do, so they didn't believe me at first. Then I voiced my concern to my mom and after some dialogue discovered she had noticed this starting to happen more and more before that and consciously or subconsciously started to do things so others wouldn't notice it as much, like answer questions directed at him herself, etc. When talking with dad about it, he refuses to be tested or see a doctor to find out what is going on, but he has started to acknowledge that it is happening but we have no idea what stage he is currently in. I'm hoping to learn more about caregiving a parent with dementia by being a part of this group and to find educational resources for both myself and mom since other family and friends are noticing now that it is more pronounced and she can't cover for him any longer.

Welcome aboard. I care for my older sister at our home. It works well for now and my husband is very supportive. My sister listens and does whatever he suggests. Me? Not so much but at least she is here and safe, eats whatever I cook and sleeps like a rock. You will figure out ways to make things easier. Siblings are hard to convince and I can’t count on mine either. There are lots of us on this discussion so ask your questions or solutions or rant any rave. We will understand.

Hello @daughter1 I am sorry to read of your new caregiving journey and your folks, especially your dad's healthcare troubles, it is great to have you here at Mayo Connect! This caregiving group is a great one and have a wealth of information to share based on their experiences. Plus we all love to share our hints and tips to make the caregiving job a bit more understandable and almost manageable.

My MIL had dimentia and your post rang many bells in my memory regarding that. First, the denial was huge in her family and her husband frequently covered for her until her actions began to spill over into the town they lived in. Other than my wife, all the siblings refused to believe anything was wrong. The worst outcome of this was so much time was lost when communications, questions, decisions, etc. could have been made with some input from their mother, but they missed that. It made things tougher down the line for sure. My wife fought brain cancer for over 14 years and while I was her caregiver she made sure we had the tough conversations necessary, but which made for a much smoother time for our adult children when she passed away than was had by her siblings when her mom died.

I would suggest you try and get some of those hard discussions underway and from experience again I suggest you might want to get HIPPA authorization so you can discuss your father's condition firsthand with his medical team. Again, this was a huge help down the line.

I don't know where you are located, but some of the state chapters of the national Alzheimer's Association have some excellent resources and also (http://www.alz.org) online.

What do you see now as your biggest challenges in your caregiving?

Stength, courage, and peace!

Hi @daughter1 - So glad you came to Connect! Welcome. You will find that there are lots of people here dealing with situations similar to yours. I know this must be a scary time for you. My husband was diagnosed with Mild Cognitive Impairment (MCI) in 2015. Same as you, I started noticing little changes that I couldn't ignore. I was at a loss. You just can't go up to a grown person and say "I think something is wrong with your mind. How about we see a doctor?" I ended up just breaking down crying at the doctors office when I got a very bad cold and went in for treatment. I told the doctor what was going on with my husband, and she said she would talk to him when we came in for his annual checkup. Like your dad, my husband already recognized some of the changes so when the doctor talked to him about it, he agreed to go have an assessment. That's how he got diagnosed with MCI.

Mayo has a program called Healthy Action to Benefit Independence & Thinking (HABIT) that was established to help people dealing with cognitive issues. If you are eligible, they run 10 day programs where both the patient and the partner attend to learn techniques for dealing with the cognitive decline. The program was a real god-send for me and my husband. We go to Mayo Jax and there are several people who come with adult children as their partners. And there is one man who comes with his wife and daughter.

Here is the Connect Page dealing with the program:
https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed/what-is-habit-healthy-action-to-benefit-independence-thinking/
Getting a diagnosis is the first step so if there is any way you can manage to have that assessment, it will be easier for you and your dad.
Are you having problems with particular issues with your dad? From what I've learned in dealing with my husband and other caretaking situations some of the top issues tend to be driving, finances, and surprisingly, sometimes hygiene. Don't know if you are having any of those. Wishing you and your family all the best.

Hello, I am also in the position of caring for my husband who has dementia or Alzheimer's and look to this forum to find answers and advise to the many challenges I get on a daily basis. It feels like I am not alone when I read about others experiences. I am not familiar how this works but want to be able to communicate with others like me. I am not computer savvy but am willing to try.

Hi Scott, I love your posts and am just now trying to learn how to navigate this forum which to others is probably very basic. Nothing about this is basic to me. Forgive me for not using it correctly.