Introductions: Are you caring for someone with dementia?

I am also in this situation of caregiving for my mom with newly diagnosed moderate dementia. So hard to see such a quick change from a totally independent active woman to needing to call me 8 or 9 times in a day to confirm how to use her washer/dryer, how to check her phone for messages, what appointments she has coming up, etc. After a day with her, I feel quite drained and just need downtime to regroup.

Hello @kdo0827 You are in! Welcome to Mayo Connect and the caregivers discussion group! I am Scott and I was my wife’s full time caregiver for 14 years as well as a caregiver for my MIL who fought dementia.

This group is a great one made up of listeners, supporters, and helpers! I have found lots of useful tips and ideas for caregivers here!

I understand your feelings of frustration. Caregiving is an arduous journey and can be very isolating and challenging. I struggled with my wife’s anger often plus she was incredibly repetitive in her words and actions. I have no magic suggestions, but her neurologist helped me by explaining oftentimes patients lash out at the person they feel safest with — so that frequently is their loved ones and caregivers. In my case I kept an old pillow on my sofa, which I often used as a late night punching bag when my frustration overtook me.

How can we help most?

Strength, courage, and peace

Hello @kathymcl Nice to have you in the caregivers group here at Mayo Connect. I am sorry to read of your Mom’s journey.

Fast changes were always scary and frustrating for me. They are tough to navigate!

The repetitive aspects of caregiving can truly be exhausting. They certainly were for me. My wife would call my name hundreds of times a day. I almost changed my name 🙂

I always say there should have been an ‘employee manual’ given when I first heard my wife’s doctor calmly say ‘you’re a caregiver now’. It’s a challenging role to be thrust into for sure!

How do you recharge? I bet other caregivers here could use any tips and techniques you use!

Strength, courage, and peace!

Hi @kdo0827 and @kathymcl - I'm going to echo what @IndianaScott said - it takes all the love and patience you have and sometimes even that is not enough to keep you from seriously considering a name change! (LOL... Scott you made me laugh.) It is sometimes just heartbreaking to have to face the losses - like not knowing how to get phone messages, not remembering the way to the mall, etc. My husband was an engineer and seriously, at this point, I'm the one who has to figure out how to change the bulb in the refrigerator when it burns out! But for what its worth, someone once told me that no matter how much a person forgets - words, directions, faces, names - they always remember what it feels like to feel loved. I try to keep that in mind and act in a loving way whenever it's possible. Not that I hit that goal consistently, but I try. For me, sometimes a touch is easier and more effective than words - just a pat on the back, a squeeze of the hand, a shoulder rub... @kdo0827 - Is there anything particular your mom seems to focus her anger on? Or is it general? Sometimes, if I can identify the stimulus, I can either remove it or redirect my husband... Best wishes to both of you!

@IndianaScott thanks for your note back. Up until now, my only way to recharge was to come home from her senior’s residence and sit like a lump on the couch and have some quiet time. I used to do that in my final years of working after a tough day. He’d see my face coming in the door after work and tell me to go sit on the couch and he would take care of dinner. I retired 2 years ago at 67. Now I wonder how I would have managed the mom issue had I still been working. I don’t drive and am low-vision as a result of glaucoma. At that time, my mom lived in a senior’s residence a bus, 2 subways and a GO train away from me and it could take close to 2 hours to get to her. But we were able to find a place at the end of May, only a 23 min bus ride away from us so that is quite helpful, especially since I am there 3-4 days a week. She goes downstairs for meals but was having trouble remembering when to do that so we got her an ‘Alexa’ and set reminders for 1. Go to the nurses office now and get your medication, 2. Time to have your 1st (2nd,3rd,4th,5th) glass of water (as when she is dehydrated which is frequently, her thinking process seems to worsen), 3. go downstairs for your breakfast/lunch/dinner, 4. Goodnight, Rheta. I hope you had a good day. Sleep well - these types of things. And various other reminders to help keep her on track. Of course, she tries to have an actual conversation with Alexa which doesn’t work out too well but generally, she seems to get the hang of it. My husband insists that we take her out to lunch every 2nd Sunday so she gets to see him too which is great. These are some of the things we have put into place to help.

Hi @debbraw Thank you for the reminder that I don’t have to have the answer all the time and that even a touch is important. I wouldn’t want mom thinking I don’t want to be there tho she has mentioned feeling like she is taking up too much time. I always reassure her and tell her that I am not complaining about that. I do get exasperated by the repetitive questions and of course, feel badly about that. She now has a referral to a Geriatric Psychiatrist in April which will help at least in a more detailed diagnosis and also give her some follow-up.

Hi @kathymcl Nice to hear back from you! I LOVE your use of Alexa for this purpose! Genius for sure! Wish I'd have had that technology when we needed it!

That was some trek you made and I am not surprised at all it exhausted you! Nice to have found such a closer spot and that your husband joins in on those Sunday suppers! You are right -- "great" is the word!

You bring up a very important aspect of caregiving -- and that is the near impossible ability of caregiving and holding a fulltime job! For the first few years of my wife' war I was employed fulltime with a remote office in my home. While I had to travel sometimes at least when I was 'in the office' I was home for her. Then I got a new boss. A combination of a new, young manager who wanted 'her own team' and being told I wasn't enough of a team player since my 'allegiance was split between my job and my wife' resulted in her firing me. Coupled with my wife's condition and needs, it was a devastating time in my life for sure In the end we managed by being frugal, the ACA, robbing Peter to pay Paul, and selling a heck of a lot of our stuff to make ends meet. This was the time that led me to Mayo Connect since I was so isolated and irritated in that all I was reading about caregiving at the time was what I call 'feel good' caregiving stories about folks whose employers gave them paid time off, flexible schedules, continued health insurance, or were uber-wealthy celebrities. I wanted to find a place that talked about what caregiving was like for the vast majority of regular folks.

How did you manage your caregiving demands before you retired? It must have been hard!

Strength, courage, and peace!.

The Alexa idea is perfect! I don’t know how to set reminders as you’ve done. Can you share how?

Of course kdo0827. I just ask Alexa to set a reminder. When asked what the reminder was for I gave it the actual language that my mother would hear e.g. “Rheta, wake up. It’s time to go to breakfast.” It asked me when the reminder should be set for,and I just say ‘every day at 4pm’, or if it’s her reminder that maybe the PSW is coming to help with her shower, then ‘every Tuesday and Friday at whatever o’clock’. Sometimes I will set the reminder time also for the night before a next day appointment “Rheta, just a reminder. Kathy will be here at 10:00am tomorrow morning to take you to your doctor”. Then set the reminder again for the day of- “Rheta, don’t forget Kathy will be here in one hour to take you to the doctor”. She seems to really enjoy the fact that someone is speaking directly to her. I gave it a nightly reminder for 8pm that she really seems to enjoy, “Rheta, I hope you had a good day. Have a good sleep and let’s talk again tomorrow. Goodnight” . Mom likes saying goodnight back because she feels that someone is actually connecting with her, seems less computerized to her. As long as mom says, Alexa, thank you (rather than thank you, Alexa-hi how does not ‘wake Alexa up’), Alexa will respond in some way (thank you, good nite, etc). I am pretty sure you could also do this on a Google system. Hope this helps.

Thanks for your reply. My Mom has been an angry person for as long as I can remember. It’s like an undercurrent. Now she gets very angry anytime I have to tell her no. Such as no driving especially. I know it’s a hard thing for anyone. As she forgets she can’t drive this battle goes on a lot. She is quite difficult to handle. Add that to my depression and I’m just very unhappy.