My mother was recently discharged from the hospital and I was told that her confusion was possibly linked to a UTI (delirium, or dementia) and that time would tell. Considering she had already been diagnosed with Parkinson's (likely caused by prior medication), it looks like PD dementia. Throughout the day, she has moments of coherence where she seems like her usual self, but then periods of confusion, irrational fear/paranoia and when she hears voices (she tells me this herself sometimes).
Long story short, we have to wait 3 months for her follow-up appointment with her neurologist. Meanwhile, we're both trying to adjust. I had always intended to help my mother "age in place," but dementia adds another level I wasn't prepared for. I've bought a couple of books and am researching when I can online.
Any advice on navigating an inconsistent appetite, comfort with medication, keeping her stimulated/engaged, etc.? Thanks in advance.
I am so sorry that you are dealing with this. It’s very challenging.
What testing has her neurologist done?
There are meds that may help with the hallucinations.
If your Mom is interested she should know about her diagnosis, and you can learn together, she should be able to speak honestly with you, you should assure her you will be there for her, even if eventually you cannot do 24/7 care yourself. She should be informed of the truth if she is able to hear it, and I as a nurse never held with the theories of therapeutic lies; I just don't see them as therapeutic. Lies terrify people.
For yourself, learn all you can, yes, but give yourself rest and breaks and approach this realistically, understanding that you WILL be faced with limitations, and that this WILL change your relationship. I would myself suggest seeing a Licensed Social Worker in private practice to discuss this new journey you are embarking on with your Mom. If you like her/him I would check in with her/him every few months to begin with.
I wish you the absolute best. Know that what decisions you make today are not to be cemented to stone. They are to be as malliable as you can make them. I hope you will update us as you move along.
My bro told me that he could not say that he was glad to know all about what was coming for him, but that he WAS glad to have the truth, and to know why he saw the world in the way he then saw it. Again, good luck.
As you know, this won’t get better. I’m very sorry and wish you luck.
Great for getting her out and stimulated in a wide variety of ways.
Don't sweat the small stuff
Pick your battles as to what is "important"
As far as appetite, offer the regular meals but have snacks that she can have. Leave fruit out for her.
A small refrigerator that she can have access to with yogurt, bottles of water or fill cups with straws and tight fitting lids, a few snack size things like packages of crackers, cookies, pudding (keep these at a minimum) and cups of applesauce, gelatin....Just put a few items in each day, don't load up the fridge.
It might come to a time when eating all of a meal will be too much. Break it into several small meals. So lunch might be a half or a sandwich and a little cup of soup and an hour or 2 later offering another little cup of soup.
(my Husband would eat part of a meal and fall asleep and when he woke he would have a little something before he fell asleep again, he would sleep until lunch or dinner and eat and nap before bed...repeat the next day...(movie Groundhog day has nothing on a person caring for someone with dementia!)
All of this is so true and we don’t recognize dementia until it’s sitting in our sitting room so in support of someone suffering with dementia,
● If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
● If I get dementia, don’t argue with me about what is true for me versus what is true for you.
● If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
● If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
● If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
● If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
● If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, dance, listen to music and visit with friends. Those that know me know what I want to listen to.
● If I get dementia, ask me to tell you a story from my past.
● If I get dementia, and I become agitated, take the time to figure out what is bothering me.
● If I get dementia, treat me the way that you would want to be treated.
● If I get dementia, make sure that there are plenty of snacks for me in the house. Even know if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
● If I get dementia, don’t talk about me as if I’m not in the room.
● If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
● If I get dementia, and I live in a dementia care community, please visit me often.
● If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
● If I get dementia, make sure I always have my favorite music playing within earshot.
● If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.
● If I get dementia, don’t exclude me from parties and family gatherings.
● If I get dementia, know that I still like receiving hugs or handshakes.
● If I get dementia, remember that I am still the person you know and love.”