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Abducted by Aliens? Or Just Sadly Negligent?

Just sadly negligent, I’m afraid. Not for lack of trying. I have been working long hours at my job as a Director of Internet Marketing, plus quite a few hours a week typically on issues related to my Aunt Vera and her needs. My blog has had to take a back seat for a while!

I took the redeye to Boston on Tuesday August 22nd to visit Vera and make sure everything was being done properly transitioning her from hospital to skilled nursing back to assisted living. Vera seemed pretty upbeat and very sociable. I made a point of getting there around 2 pm as she seems to have the toughest time from about 3 pm until she settles into her dinner meal.

I have hired a geriatric care manager who is fantastic. It has become pretty apparent that as more people become involved (doctors, nurses, therapists etc), the more you need one person with expertise to pull all the various threads together. I spoke to a number of people who said the GCM can navigate some of the more frustrating aspects of getting the right care – and they can be a great advocate as they have navigated this world time and time again. I found a woman who also happened to graduate from Simmons College – which is where my aunt went to school. This is because I have discovered that finding “connections” with a new person is essential because the ability to create new memories has diminished dramatically.

A few other things I have learned over the past few months:

No point in arguing. Some of the nurses want to argue with the patient. It is absurd to get into debates when someone has dementia. It really isn’t fair. The best thing to do is find a way to AGREE on something.

I feel I’ve become skilled at this – not objecting, but instead finding a reasonable way to get agreement. When Vera removes her oxygen, I don’t say, NO NO YOU HAVE TO PUT THAT ON, I calmly say, Oh Vera, I think the doctor would like you to keep that on a little while longer. It will make you feel better they said. Then I cue her by helping to replace it.

This might happen four or five times in the next hour – there is the issue of perserveration that occurs with dementia. You can’t get more frustrated, or say, “I told you a minute ago…” That just isn’t fair to the person.

You just say the same thing again in the same calm, agreeable manner. Sometimes they will remember – oh yes, you did mention that – and sometimes it is “new” information. That’s okay.

The most selfish thing a person can do when dealing with someone who has dementia is expect them to have the same way of thinking, the same cognitive ability, as a person withOUT dementia. It’s cruel and unfair to make the person feel like they are doing something wrong or badly.

The person at the assisted living who directs the Harbor unit specializing in memory loss says this is one of the biggest challenges with families. They come in an tell these people how bad their day was, all the people they know who have died, remind them someone is dead that they think is still alive…try to get them involved in complex problems (financial, family relationships) with seeming total lack of understanding that this is just too overwhelming to someone with dementia.

I think the issue is that many people are simply too narcissistic to let that stuff go. They think about what THEY need rather than what is best for the person with dementia. One of the things that really “stays” in dementia is emotion, and family members need to respect this.

A great example of how this works in action – my aunt suddenly started talking about last Thanksgiving (the director of Harbor says this becomes more frequent this time of year) and wondering why her sister didn’t invite her. She started to become very upset and emotional. If she didn’t have dementia, I might join in and say, yes that is terrible, that wasn’t right. However, she DOES have dementia. So instead my job as a loving family member is to help her feel better. I said, I didn’t know why, but maybe they had the flu or weren’t feeling well and just forgot to let her know. She immediately calmed down and felt better. What would the point be in feeding the fire of her being upset with her sister? Even though it made me angry that her sister hadn’t bothered to invite her over one lousy day for a Thanksgiving meal – absolutely nothing would be served by saying that to Vera when she was already so upset.

It does become second nature to navigate these conversations – but it can still be quite a challenge not to fall into old habits of talking about negative news and stories. It makes me realize just how much we tend to focus on “bad stories” in our lives – gossiping about the negative.
If you are dealing with a similar situation, I highly recommend the book “Learning to Speak Alzheimer’s” – it really helped me understand the world of the person going through this – and made me realize the importance of inhabiting their reality when you are with them, rather than trying to get them to understand your reality.

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