I have been caring for my mother for 1 1/2 years now. She has a lot of ailments like hypertension, diabetes, etc. We take her blood pressure three times a day (when she takes meds) and blood sugar and record it, as well as a checklist for her PT, hand exercises, handwriting exercises, chair yoga, and back exercises. We write down what she eats through the day, indicate if her water intake is good, and add general notes about mood, cognitive issues, etc. However, the doctors just glance at the information and set it aside and none of the family members are interested in reports of her care.
What do you track, and why? Is it important to keep a record like this or is it really not necessary when caring for a loved one at home?
We know which values are normal FOR HIM. He has low BP, but that’s all right FOR HIM. We also know what’s too low, even for him.
Here’s what we track every morning:
-BP
-heart rate
-temperature
-urine quantity, color, clean or murky
And morning/lunch/dinner:
-bowel movement or not
We know a lot about his health by tracking this, and reacting accordingly.
We haven't been tracking heart rate, temperature, urine, and BMs but after reading your reply I feel we should add those to our routine of information gathering :)
Great help, thanks again!
If he ate his full lunch.
How much he slept.
Once he went on Hospice I was more detailed in the notes I kept. the simple reason is that documenting declines is important. So if he went from sleeping 8 hours to sleeping 10 hours that was important for Hospice to know. If he went from eating a full meal to only eating half, that was important. Needing help with eating when he did not need help the week before.
But if this is just for your information you do not need to keep such detailed info.
When starting a new medication or a new dose it is good to keep notes in case there is a change in personality, a change in sleeping or eating patterns.
On the other hand....a year from now if you look back on the notes you have taken it will give you a picture of what things were like and how much has changed. If you think you are having a "bad day" now and you document your bad day in a year I bet that "bad day" won't look so bad.
Documenting your days and the changes is another form of "journaling" or back in the "olden days" some kept a diary.
Along with "facts" feel free to put in your personal notes, feelings. If the medical staff is not interested in the day to day things UNLESS there is a significant change and if there were to be such a change I am sure you would not wait to report it you would contact the office or send a message through the "patient portal". they do not need to read the daily journal you keep .
I have my mother get on the scale each morning "after" she goes to the bathroom. Then I record it on a monthly calendar. I was told the rule is anything more or less of a 3-lb. change contact the primary care doctor.
Next, I take my mother's temperature and record that as well. I log in all morning and evening medications on a calendar--one for morning, one for nighttime.
On several occasions when mother went out in the rescue I have a prescription list on the refrigerator and also one in my pocketbook that I bring, so I am always prepared.
At the top of this list I have her name/birthdate and also wrote that patient wears hearing aids, is on a blood thinner and has Lewy Body Dementia.
These things are important because oftentimes if a patient doesn't have their hearing aids they cannot respond correctly.
Basically, the doctors flip up their laptop and scan the numbers--it's up to you to go prepared with your "wish list". You have about 8-minutes to tell your story in the office.
They want to know if the patient is thriving or declining. You have to be the one to ask for services. The doctors don't know the patients the way you think they do.
Stay focused and you need to have a "paper trail" (a/k/a referrals) for any type of services. A relationship with a good primary care doctor and if you can find one in your area a Geriatrician, which are far and few between. Check out ALL doctors on your local State Medical Board.
Don't let them torture your mother with a million blood draws. Try to limit them so that they are NOT repeatedly doing a draw. You sound like someone who is conscientious and you will learn along the way. You sound quite capable. Your mother is fortunate to have you.
Fortunately, my mother is thriving (considering all the conditions she has) at the moment. The blood draws have not been excessive - she goes in for a blood draw twice a year unless there is something that pops up and her doctor wants to test for something specific. I am so happy we found her a great doctor that she and we trust.
Again, thank you for sharing your insights. Very helpful information.
Temperature and very important notes about bowel movements whether they were normal and consistent.
Time spent outside in the sun.
At one time mom's primary wanted to follow her liquid intake due to dehydration.
I kept an updated list like Ireland below of mom's current prescriptions, family/ physician contacts and her medical history. A copy was in her wallet & one on the fridge & one for rescue when she went.
Mom had several different sitters and included myself & my sister. It was so helpful to see what occurred prior to our shifts.
We were lucky to have a doctor that did appreciate the daily notes.
When my mother had her hemorrhagic stroke she was dehydrated at the time. We have kept on eye on that since day one of our caregiving tenure.
I think you're right about tracking being a good way to communicate between caregivers. As my wife and share the caregiving responsibilities for my mother we each do refer to the log book without having to ask the other questions about what is in the log.
Thank you again for sharing. Your input is valuable.
Is it perhaps time to have your mother assessed for care needs in home and/ or facility placement or perhaps even hospice/ palliative care? It is not clear how declined her physical status is, but it never hurts to inquire with agencies such as home care or hospice to have them explain their services. This might take some of the pressure off of you to be " tracking data" on your mother.
Or perhaps you all just need to focus on quality of life for all, enjoy the days , and not worry about the record keeping....
Practice good self care for yourself!!!
My mother was in Hospice care after she was released from rehab due to her hemorrhagic stroke. She was released from Hospice six months after my wife and I relocated to care for her in her home. Fortunately, she continues to improve in some areas but she is still showing some decline in other areas. She sees her doctor every six months at this time, at which point he does a regular assessment on her.
We are all doing our best to enjoy our days, and are thankful for each one we share.
Thank you, again for sharing. It is appreciated.
I advise our write ur summary out as docs have a limited amount of time with patients... Doc can read faster then listen. .that way the limited amount of time can be used for more important questions
Thank you for taking the time to respond, your input is important.
Yes, her blood sugar should be kept track of. Maybe tracking her eating because of her diabetes. Hope you allow for a treat. Hope you allow that there are days she just does not want to do anything. We all need a break from routine.
I wrote notes to Moms Neurologist. One page, one sided in 14 font. I only noted changes from the last visit. If everything is the same, no need to show them your charting. If there has been changes, thats all her doctor needs to know.
We do allow for treats - she gets a treat with dinner if her water intake is on track for the day, and we work in a treat during the week just to surprise her and say thanks for doing her PT or some other positive reinforcements.
We do allow for days that she just does not want to do anything. Sometimes she gets the weekend "off" and sometimes she'll say she wants to use one of her "golden tickets". (We have no such "golden tickets", but she's a big Charlie and the Chocolate Factory fan and that's her way of asking for the day off.) But mostly, due to her dementia, we try to keep her on a set schedule, and it seems to work best for her at this time.
I think your notes to your Mom's Neurologist are my takeaway. I like the larger font you are using and only noting changes. Thank you, again, for your response. Very helpful information.
Once in a while, I would encounter visitors focusing on the monitors with normal numbers rather than focusing on the person. The next thing is an abnormal number because the patient sneezed, then would come the calls to the bedside and education that everything is fine except the monitor device just slipped from position. I hope you get my point.
As far as sugars, her monitor holds that info along with date and time stamp. So does electronic BP monitors. As far as what she eats, portion size and whether she is getting an infection dictates her control. It looks like you are preparing her meals. And helicoptering around her. What will happen as health declines and she stops eating and drinking much? She could resist whatever effects you bring forth by trying to force her. You will be pulling hairs. You might start taking baby steps to back off. Maybe start with once a day NO and only as needed based on symptoms.
I appreciate the fact that you think that our current level of record-keeping is "overkill unless you are running an experiment and plan a statistical analysis." This is the level of record-keeping we used when my mother was in Hospice care. As she is no longer in Hospice care my wife and I posted this question to see if the amount of information we were logging was still necessary. From the numerous answers provided to this question, I now wonder if we are actually tracking enough.
My mother takes her own BP readings, we just log them and review them for spikes or correlations with diet, exercise, and mood. As she developed labile hypertension that was detected during her recovery from her hemmoragic stroke, the rehab unit took her blood pressure at each administration of medication and it became part of her routine. It's not hurting anyone so we let her do it. And if we have the numbers, of course we review them for trends or insights.
I assure you, our method of caregiving does not consist of constantly searching for more data to collect, analyze, or create some sort of statistical analysis or calling the doctor each time she sneezes. If that is how my question was posed, I certainly apologize for confusing you.
We do prepare her meals as it is difficult to find frozen, prepared, or delivery meals that cater to her conditions (GERD, ulcer, labile hypertension, and diabetes). If you know where more convenient meals are the can cater to her conditions, it would certainly be a help if you could share that. She has been on a waiting list for Meals on Wheels for over two years now.
"And helicoptering around her." Wow. Frankly, I find it offensive for you to sling a label like that out there when the question that was posed was what do you track and why, are we tracking too much. With all due respect, you do not know what things were like when my wife and I got here and what my mother's needs are. I would love for you to share how to care for a loved one suffering from depression and dementia in a non-helicopter way.
When her health declines and she stops eat and drinking as much we will follow the advice of her health care professionals, as we have done to this point. If she "resists whatever effects you bring forth by trying to force her" we will roll with the punches, stay flexible and follow the advice of her health care professionals.
Thank you for bringing a former health care professional's view on this question. I appreciate your time.
Thank you , LoveLea, for taking the time to provide a valuable reply. I appreciate your time.
I do mentally track her BMs and if she has one when I'm out, the sitter will always tell me. When she hasn't had a BM for 2 days, I will give her Milk of Magnesia before bed and the next day she'll have a BM.
Anything that her palliative nurse or her physical therapist need to know, I'm able to tell them from memory.
I wish you luck in the care of your mother, you are a blessing to her and should be commended for your dedication.