I have been caring for my dad for about 4 years, 3 of which were remotely and the last one locally. Like everyone dealing with caring for a parent or other loved one, there is no advance cramming you can do to prepare for this job – you wake up one day and suddenly you need to be an expert in all things elder-care. It is the ONLY job that doesn’t come with a manual and there are few resources to help you other than learning on the job.
I thought it might be helpful to share some of the techniques I have developed and learned over this time period. These work with my dad, and I hope that they might be useful to you. Unfortunately, there are over 70 different types of dementias so your loved one’s situation may be different from my fathers, but all dementias have many crossovers, so it’s worth trying some of these techniques. You have nothing to lose.
- Pay attention. Be observant. To everything. I missed so many red flags when he was deteriorating. I was so concerned with pushing him into assisted living that I stupidly was relying on him (someone who I now know had the early stages of dementia) to tell me when he was ready. If you aren’t there, every day, then make sure a neighbor is watching out for signs. Some of the early signs that I DID KNOW about didn’t register to me as signs. Here they are:
- Losing the ability to “work” the remote control on the TV; or conversely, saying that his/her TV is broken. Again.
- Difficulty doing tasks that were, before, second nature. In my case, my dad could send emails, was on facebook and was pretty “with it” for a guy in his mid-80s. The day I spent one full hour with him on the phone trying to instruct him how to open a browser window, should have been more than a red flag; it should have been a rocket blast. But it wasn’t. Because I didn’t know anything about dementia. I thought it was simply, short-term memory impairment. It is so much more.
- Impaired judgment. One day, my dad decided to reheat a slice of leftover pizza. So he put the tin-foil-wrapped slice right on top of the burner and turned the burner on. Can you spell F-I-R-E? Again, didn’t register as a red flag.
- Word finding difficulties. This comes with aging for all of us. It doesn’t necessarily mean dementia, but it is a possible pre-curser. So if you see signs of this, be even MORE tuned in for other signs.
- Forgetting doctor appointments or to take medicine. My dad even forgot that he brought his walker to lunch. After lunch, he went crazy looking for it in his room because he had literally no recollection of it every leaving his apartment.
- When you enter the room where your loved one is sitting, make sure you are directly in front of them and have made eye contact. First offer your hand (even if you plan to hug them next). By offering your hand, you give them time to process who you are. Processing slows down with Dementia. Their vision narrows and eventually becomes binocular so don’t come at him from the side as you may startle them. The instinct to shake hands will never leave them and by extending your hand to them, they will take yours instinctively. Then tell them who you are, even if you think they should know you. And make sure to tell them your relationship. “Hi Uncle Paul, it’s Bev, your niece.”
- Always tell them what you are about to do or where you are going (if you move them). Their world is very scary right now. They want advance notice of any changes. The fewer changes you can make, the more comfortable they are. If you never take them from the facility where they are living, they won’t care, as long as their routine isn’t disrupted. For them, routine means safety.
- If you are a healthcare provider and want to take their blood pressure or re-bandage a wound, make sure to tell them what you are going to do and why and then, most importantly, ASK THEIR PERMISSION TO DO SO. They have so little control left; they want to retain control over their body.
- Try to focus your activities on things they can still do. Music is a wonderful activity as it is retained in a part of the brain that is unaffected by Dementia. Dance together. Do karaoke. Play name that tune. Play catch with a beach ball or a football, even from a seated position. Hand eye coordination seems to stay in place and it can be fun!