Diary or Journal

Ernie123

I recommend keeping a journal or diary about your LO and yourself as time passes. Just brief notes every day or week to describe any changes in your LO and how you are doing as a caregiver. Challenges and successes.  I have since 2015 and have found it useful. In a practical vein, it is useful when talking to doctors. It is hard to talk about symptoms and changes from a few weeks or months ago from just memory, especially if you are stressed, which is the normal state of mind. I also find it helps me to step back and be self aware.

I recently reviewed my many pages of notes and summarized a few of my personal reflections which I will share : 

Alzheimer’s: some thoughts

You eventually adjust. The adjustING is hard.

One day at a time is a cliche that is true. 

Ambiguous loss is the root of the sadness that won’t go away.

It is never all bad or all ok. Don’t fall into the trap of thinking it is all one or the other.

Most people are uncomfortable with the disease and are unsure of how to respond. Accept their confusion and discomfort as concern and recognize you were probably like that once yourself.

Have a plan. It can be revised as needed, but it gives support and a sense of control to deal with things head on.

You will usually feel alone. Many  of your friends seem to fade away but you will learn who your true friends are.

Be honest and direct with friends and family. It makes things easier for you and for them.

Learn to accept help even if you have never had to before. You cannot do it alone. This is probably the biggest challenge you have ever dealt with.

Learn to recognize physical symptoms of stress. Practice breathing, mindfulness to counteract.

Even when you try hard your fuse gets shorter. 

Very hard to suppress emotional reactions to your LO’s anger and argumentative behavior. When you feel hurt and unappreciated an emotional response is normal even if  your rational mind says let it go.

Visualize yourself as a doctor or professional caregiver and not as a spouse when dealing with difficult outbursts. That helps avoid emotional reactions that make everything worse.

Medications make a huge difference for both of us.

IWBH1990

I started a daily journal on an excel spreadsheet with a few columns last summer.  One column for general notes and other for timeline events (including seven stages events) and also columns  monitoring things like her anxiety/anger, accidents, etc. It was helpful at one point to be able share with Dr, how many times in last two weeks DW was angry enough to knock pictures off the wall, tip over chairs, and get very physical with me. Based on that data Dr. was able to prescribe proper meds to control outbursts. One of the side effects of that med was possible constipation which my wife has struggled with from time to time, so I just added a column to monitor BM's as well.  I wish I would have started the spreadsheet the day after original diagnoses. 

Dave

ElaineD

I have kept a spreadsheet monitoring my OWN health on a daily basis since 2013.  I just add comments about DH now, as needed.

It is indeed helpful to have a daily record since details get blurry.

I fill out my spreadsheet each morning.  It's never too late to start.  Start where you are now.

Elaine

ButterflyWings

Thank you for this encouragement to just start. I had thought of journaling, but it felt like just one more thing to do, when my 24/7 caregiver plate is already overflowing. Though I have shared articles and links here before, on how beneficial journaling can be.

Also, the reflections that many on these boards share, confirm that logging things over time can help track and process the path of this disease, which is different for each of us/our PWD.

I have occasionally looked back at prior posts of mine, which is a kind of journaling and timeline with benchmarks for situations that were significant enough that I reached out to this community for help with. And so far, my recall has been pretty good for the Dr, because we have easy and timely access when a behavior or physical change occurs, and I always reach out for their input via the medical portal, phone, or tele-health Zoom appointment. Then they keep the notes there in the portal so I could always look back there if I wanted to check when meds were added or changed, or if some specific step down or issue occurred.

Still, I can see the value to having my AD notes in one place, and to track some things that I just can't always remember or maybe didn't think it was significant at the time. 

Starting my simple spreadsheet today. Thanks for that suggestion. It will include the recent issues we are having with DH refusing to bathe. (2.5 weeks now...) =| And whatever else.

nancyj194

I've never done a spread sheet, though may google how.  

I do keep a journal and have since this all began.  I take important notes on my android phone for when we see his neurologist.  I typically don't go back and read what I wrote, as it is mainly to help me clear my mind.  I may start going back just because.  

Thanks for sharing, all

Ernie123

I don’t use a spreadsheet. I just use the “ notes” feature on my iPad. I start with the date and simply note whatever is going on, mostly about my DW, but sometimes about me. I make entries maybe twice a week and comment on the last few days. I have done this now for six years. I started when she was three years in and I wanted accurate info for the doctor. It is fascinating to go back and reread now. One thing I learned early on is that it is very hard to recall with any accuracy what happened a few weeks ago without notes. Especially when you are busy, stressed and overtired! My notes were very useful when the referral was made to a geriatric psychiatrist three years ago. I also shared them occasionally with my children who don’t live nearby and are anxious to keep up to date. It also gave me a sense of being in control and monitoring our life. It is easier to make plans based on records and not just confused memories of what happened a few months ago.

jfkoc

Thank you...I did none of the above but know now that doing so would have helped!

anneleigh

I just told myself yesterday that I needed to start a journal.  This was definitely a reminder for me to do this.  I had an absolute terrible night last night with DH.  He kept getting up every hour to go to the restroom or just wandering around the bedroom.  I had been sleeping in alternate bedroom, but I thought perhaps he just needed reassurance I was beside him.  So I slept beside him and held his hand.  I would think the 3 quetipine and melatonin would help him get sleep, but It definitely does not.   We have a Dr appt in early April so I am hoping I can get some answers or perhaps something adjusted for medicine.  I was at my last rope last night and thought how much longer can I take this!!!!!!    Just venting

Ed1937

This is a pretty good thread. I started keeping notes before my wife was diagnosed. If she fell, I noted it with the date and anything else that could have been part of it. Anything new, or anything that seemed to have worsened was noted, along with anything else that could prove important in the future.

BUT -- for whatever reason I stopped writing about things that happened. My last entry was in October of last year. Now I realize that I need to start making notes again. Thanks for the thread.

Nowhere

Throughout the years I would write dated notes about his symptoms and behaviors and it helped when seeing his doctor. It was therapeutic to write because when I’d read back it helped to validate my feelings as there were things I didn’t want to share with friends or family. There were times I doubted my sanity. And after placing him, when I questioned how I could have let go of the 24/7 responsibility for him, reading the history gave me the stark answers required to validate my action. I made the decision to place him. I own it. It was my responsibility to do so.

storycrafter

Ernie, thank you for your very helpful post. I really needed this reminder. I had stopped keeping notes after doing so for some time. I'm to a point I notice my own short-term/long-term memory for daily details can easily fade into the fog over time. It's very helpful to have the specifics written down.

I also greatly appreciate your sharing your personal reflections. You make very astute and wise observations that affirm and validate my own experience. Your putting it into words so well is comforting. It helps to know others are on this journey beside me, and gives me strength.

Grateful for your posting....