The most difficult part of dementia or any other mental disorder that happens is not the physical limitations that come with it, but the emotional and mental stress caused by it on the patient and the ones near. The absolute worst thing that caregiver can do is let this despair over take him or her. The emotional burden can get over whelming but to give up is not an option. Symptoms will change, moods will swing, sentences will make no sense, you will be told that fabric is hurting, and at times things will get batter for a bit and then deteriorate faster than expected; but that is the nature of this disease and only option is to cope with it and keep your chin up.
Breaks are an absolute must. The caregiver must get breaks, it could be small as watching a movie, or cooking to going away for couple of days. Though the luxury of going away is not available to most people, as the patient will always look for the primary care giver. Support from family and friends is always welcome. Let me give you all some pointers on visiting someone suffering from Dementia or Alzheimer. One thing I can not emphasize enough is how much it helps when a visitor comes, so go and visit them. When you visit, visit with a jolly positive attitude, make them smile or laugh; don’t just come and visit and be awkward! Secondly, see if you can be of help when you visit, but not intrusive, the caregivers are used to taking care and they usually have a setup and process. Make the visit as normal as possible, there is not real reason to ask too many questions and the most importantly, the care givers have the most experience in dealing with that particular patient and they know the best, so unless you are a doctor please refrain from giving constant unsolicited advises or doing “normal” things to or for the patient. This usually messes up with the care cycle.
One example of this kind of behavior was when we went to San Diego to visit one of my cousins. After lunch, mom had already had her water and dessert. Even after informing people there that she doesn’t need anything else, someone came with a full big cup of water and gave it to mom. Mom drank the whole thing (It’s usually the case, what ever amount of food or water is given to her, she finishes it all). For a normal person this is most likely not a problem, but for us it became a big problem. I tried to take mom to the bathroom before our drive back but it was an unsuccessful attempt. I took her to the bathroom specifically because she was given that big cup of water. The trip back to our house was just over and hour and fifteen minutes. After about 40 minutes on the road, mom said she needs to use the bathroom. This was a big problem because it is very difficult for her to use a public restroom as it causes confusion, the lack of cleanliness increases the chances of infections such as Urinary Tract Infection (UTI). I asked her if she could hold it for a bit, she said yes. But by the time we got home, she was in a lot of pain to the point that it was tough for her to walk straight. Not fun.