When you are a caregiver for someone who has dementia or any other illness, organization in your life is crucial. The road to coping with dementia and being a primary caregiver is fraught with continuous twists and turns.
This organization includes medical, legal, financial and home needs before and after the diagnosis. It is important to also prepare for all the daily tasks involved and then prepare for the outcome of the disease and the after-death follow-up needs.
Here is a breakout of many of the challenges one can confront as a caregiver:
- Initially, the legal and financial affairs must be in order. It is necessary to know what monies are available for care, what insurance is in place, and what plans can legally be made with the available funds for the caregiver to use for the patient. Also, it is important to have a "do not resituate" order, required by the state of Massachusetts in place in case of an emergency.
- The Power of Attorney document decides who makes the decisions and protects both the caregiver and the patient, especially if the patient is no longer competent to make their own decisions.
- Wills must be in order and shared with family.
These are not things we want to think about, but they are the basis of organization as we move forward.
Organization in the home after diagnosis:
- Rugs must be examined and secured, if there are area rugs, with two faced tapes: this can prevent tripping.
- Bathrooms and particularly showers should have grab bars.
- Beds should be lowered so the patient can easily get in and out.
- Clothes should be examined for ease of wearing, easy access without complicated buttons or zippers.
A great deal of information tends to be gathered through the course of taking care of a dementia patient. Keeping track of that information from doctors, neurologists, pharmacologists, lawyers, financial planners, emergency room visits, rehab centers, etc. It is literally impossible to keep track of all this information, so here are a few ways to organize that information.
- Designate a file and or notebook
- Take notes
- Keep the file as organized as possible; use folders for each category of information if that is your method
- Make two copies of the DNR (Do Not Resituate order) put on your refrigerator; this is the first thing the EMT's ask for when they come to your home on an emergency call
What you can do for the patient to make your day, week, or month less stressful.
- Set up a schedule: keep it realistic
- Create as much order as possible; the patient cannot understand or deal with the chaos
- Dementia patients don't do well with change and confusion as they are already confused.
- Don't buy whiteboards, big clocks, expensive exercise equipment: even if they say, "oh, that's a great idea”. They will forget and not use the items.
- If you want to create simple projects for the patient, break the projects into small parts and lower your expectations. Remember, the dementia patient has an illness and does not necessarily react as "they used to."
- Just as someone who has cancer or some other illness, the dementia is a sick person. The only difference is that dementia is a progressive, fatal illness with few drugs and the outcome is always the same.
For the caregiver:
- Try to remember that your loved one is sick, and the behavior is not intentional.
- Don't expect too much from friends and family. Yes, they will help, but unless they have had daily exposure to someone with dementia, they cannot understand the ongoing stress and changes that take place.
- Get a shrink for yourself who can help with the clinical side of how you are feeling
- Hire a consultant who has lived through the dementia experience and can help; listen and empathize with you. That consultant will help you with resources and, most importantly, the nuances of the journey you are on.
- Get help in your home, cleaning; cooking, driving; whatever will lower your burden and is financially possible.
This role of caregiving wears people down from stress.
Whatever you can do to be organized will help you, the caregiver, survive. Your health is at risk from stress, and please be careful and vigilant about yourself.
It is OK to do that.