Working through the issues (and emotions) - giving and requesting ideas for help

Sonoftwo

Hi. I just joined this group and have reviewed a number of strings. I find it crazy that with as rampant as this disease is, each case is still somewhat unique and there is not one methodology to deal with all cases. I look forward to learning from you all!

I want to ask for direction as well as share some things that our families are doing in the hope that it may help others.

My mom was diagnosed a couple of years ago. My stepdad has not been diagnosed, but the family realizes he is as bad if not worse than her. Both have additional medical complications that are urgently being addressed. My step-brother is working with his dad's PCP to get a diagnosis. I would say they are both beginning to mid stage (still able to live at home but having pretty major memory issues, especially under stressed times)

Our family realized that we were each getting different stories from our LO regarding what is happening with the medical conditions. We joined together on a text string where we can share what we know and what we learn. Some family members live close, but I (eldest son) am four hours away. I rely on my aunt and uncle to visit my parents multiple times per week and report on what is found. We have learned so much by sharing in that text string! In addition, I have a notebook where I keep all of my daily notes. I quickly realized that without these notes, the amount of information and the rate of change from day to day is mind-numbing!

I am working with their PCP to distribute my POA to all doctors so I can get detailed information on all of the medical conditions.

I started on this sight yesterday, called and spoke to a Care Consultant, plan to go to caregiver support groups, and I just picked up two books to read on the subject, The 36 Hour Day, and Terry Pratchett: A life with Footnotes. Can anyone suggest other sources that my family and I can review to learn more about how to work with our LO?

Oh yes, and they have spent the past 20 years traveling the world (mainly cruises) and had a trip scheduled for the end of this month. We cannot get them to cancel their trip. However, due to a recent surgery, they did postpone it a couple of months! YIKES!!!!!

SusanB-dil

Hi Sonoftwo - welcome to 'here', but sorry for the reason.

The 36-Hour Day is a great book. There is a thread for book recommendation as well. Also - you are correct about the differences. The saying is "If you've met one person with dementia, you've met one person with dementia." Each person is so different due to different dementias, different life-experiences, and every personality comes to the table. The basic trajectory, however, usually follows the 7 stages in some form, even if not exact, of course.

Your mom and stepdad probably have anosognosia. This is not denial, but rather the total oblivion that anything is wrong. Good that your aunt and uncle visit with them often. But please do be sure they are eating properly, and foods are not expired. Good you have the POA, and do be sure you have the HIPAA accesses. The big hurdle is also finances. Make sure bills are being paid and that they are not being scammed. (a few of us in this forum had a LO lose a LOT, either from unregulated choices, scammers, and in our case, a formerly 'trusted' family member)

That is great that you have folks being on 'the same page'. Sounds like you can better figure out what's happening. If they are telling you something different, they may not be able to discern the difference any longer?

H1235

Welcome to the forum. This staging tool is very helpful. It will also give you an idea of the ugliness to come.
https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

If that didn’t work you can find it in groups, under new caregiver help.

I think one of the toughest things is not letting parents do what they want. Driving, managing their own bill, taking trips, living independently. You can’t count on then to realize they are not safe to do these things. You have to monitor everything very closely. You don’t want to wait to step in after an incident. The the incident could be losing a bunch of money or a horrific car accident. We were fortunate the doctor told us when mom was diagnosed that she should not drive and should not live alone. Mom took this news better coming from a doctor and we didn’t have to wonder if it was time. With that in mind I would recommend asking their doctors about things you might question (the cruise). We want our loved ones to be safe(physically, emotionally and financially) and happy. With dementia we often have to settle for safe. So much of their independence is taken from them that happiness can be difficult to achieve. Learning how to interact with your lo is important. I like this as a guide.

You tube is a great resource. Tam Cummings is good and I also like dementia care blazers.

Good luck.

Emily 123

Hi sonoftwo,

I'd say that by time family becomes aware of memory issues that can't be explained away by aging that you're probably at least in stage 4, if you use the 7 point scale from H1235.

Your parents may seem ok on the surface, but as you know from trying to tease out the threads of what's going on medically, the short term memory is slipping and they aren't really safe to be at home without supervision. Basically, control over IADL's is slipping, and perhaps over ADL's too. Misadministration of meds is always a big concern where poor mrmory is involved.

https://americancaregiverassociation.org/2019/03/adls-and-iadls-2/

I'd recommend reading the attached as well, and there's a recommended books thread here too.

understanding-the-dementia-experience.pdf

https://alzconnected.org/discussion/65171/books-about-alzheimers-disease

https://alzconnected.org/discussion/65993/excellent-handout-packet-dementia-stages-cgs-actively-dying-tam-cummings

Best wishes,