Caregiver Apps(1)

almaradio

Hi All

Does anyone have recommendations for a good caregiver app? There seem to be a few - I have been playing with a few on my iPhone (zelar, ianacare, sproutcare),  wondering if there was something a bit more comprehensive than those that people have had good luck with.

Alan

Marta

What are you hoping to accomplish with an app?

almaradio

Something that can guide me through the caregiving process, what do you i need to do? There is so much information out there - but nothing that makes it practical - looking for something that breaks it down to "do xyz - every day or every so often" to effectively manage how to care for someone with dementia.  I have read 36 hour day - but it's too much for me to keep in my head.

zauberflote

Almaradio, sounds like you're looking for a list-keeping type of tool?

What is your LOWD's living situation? How much care do you provide now? What kind of organizer do you use for your own life?

Truth: I would use paper and make a calendar (but I'm of the paper calendar generation). So, what big stuff occurs monthly? Pay mortgage/rent, pay utilities? Then you could go with the really old-fashioned system of "each day of the week has its own household task". So you might put LAUNDRY on Mondays, VACUUM on Tuesday, GROCERIES on Wednesday,   CHANGE SHEETS/TOWELS on Thursday, COOK&FREEZE Friday, BALANCE CHECKBOOK (or whatever it takes to keep track of finances) every Saturday, etc, you see the idea?

then you might break each day into its constituent parts: getting up, toileting, dressing, breakfast-- and so on through the whole day. Most days would look very like each other. 

Is that the kind of prompting you'd want? A PWD needs the exact same things PW-OD need, only possibly more help doing them. 

I don't see 36 Hr Day as being a list. I think it more prepares you for the many surprises along the way, and helps you think through how you want to deal with them if they happen. It is such an information-overload book that it bears reading over and over. I agree-- it's impossible to remember everything!

Arrowhead

Unfortunately, there is no “do this at this time; do this when this happens”. Every patient is different. Each has a different set of circumstances and each exhibits different symptoms at different times and at different stages. What works for one may not work for another. Keep trying until you find what does work for you and the patient. I have found this forum to be a good sounding board. You can usually find someone who has been in a similar situation. 

Here is advice that I give to new caregivers: 

As someone else said: Welcome to this club that no one wants to join.

First, if they do not accept the fact that they do have the disease, try to convince them; once only. Do not try to force it upon them as that can make things harder on them and on you. However, everything will be easier for them, yourself and for others if they do accept the diagnosis.  

Second, Very important: get all of their legal work done now. That includes a Will, Power of Attorney, HIPPA, and Medical Directive. You might consider having them set up a Trust. 

Third, learn as much about the disease as you can. You need to know what to expect and how to deal with it. The patient’s doctor is a great source of information. There are many good books on the subject. Many people suggest "The 36 Hour Day". Other good books are "Learning to Speak Alzheimer's" and “Alzheimer’s Proofing Your Home”. I highly recommend buying and using them. The Alzheimer’s Association is a very helpful source of information. Sign up to receive their newsletter via e-mail. They also sponsor a website called alzconnected.org They have forums and message boards where you can connect with others who are experiencing the same things you are. You can ask questions and someone with experience will answer them.

Fourth, get as much support as you can from family and friends. Don't try to do it all on your own. In the early stages it's not so hard, but it will get harder. There will be times when you will need to remove yourself from the situation for a short time. Have people on hand who can take over for you, who know what needs to be done and how to do it. 

Fifth, be prepared to do things you don't want to. At some point they will need to stop driving. Be prepared to take car keys away. Someday you will need to take away credit cards and/or the check book. Things they have always done for themselves will need to be done by others. This may be a difficult change for them but it will need to be done at some point. 

Sixth, keep a journal. Record what the patient is doing; also, your thoughts, your feeling, and how you deal with what the patient does. This can help you keep track of their progress and help you to keep track of what works and what does not. If the patient accepts their diagnosis, then advise them to keep one also. Ask to have access to it. This will allow you to better understand what (s)he is going through and to have a better idea of how to help both of you. 

Seventh, learn to lie. It can be easier for them to believe a lie than the truth. It may be easier for them to believe that the car needs to be repaired than it is to convince them that they can no longer drive. 

Remember, there are several stages of this disease. Every patient develops different symptoms at different stages, but there are certain symptoms that are more likely at each stage. Each patient will progress at a different rate and that rate may very over time. 

It will be a rough road but you will find a way to travel it. 

Cynbar

I don't know of any apps, and I agree that it would be difficult to construct because everyone's journey is so different. But the most important tip I can give you is don't expect to reason with a PWD ----- ever. From very early in the process, it will be impossible and just increase the anger and frustration for both of you. It took me quite awhile to really master this, but it has made such a difference. I was trying to reason and explain to my DH about all sorts of things ---- why he couldn't drive anymore, why he should put a coat on, why there is no meeting he has to leave for right now. Now I reply as succinctly as possible (sometimes including a fiblet) with statements like "The meeting is Friday" or "Your car is in the shop" and so on. Sometimes I have to expound a little, but I never tell him that he can't do things because of his dementia. Once I got the hang of this, we were both better off.

Marta

This site is your best app.

Sean McCormack

Don't know of any app. I found care blazers on YouTube which has been my best friend. Dr. Natalie has a video on all situations from early stages and beyond. Best of luck on your journey.