In my experience, dementia is not 100% memory loss. It’s processing that doesn’t gel with who the person living with dementia (PLWD) was, or is, as far as you can tell.
All dementias are not the same. But when I asked for an explanation as to why if the PLWD is diagnosed with say, vascular dementia, why were they also presenting with features primarily associated with levy bodies? The overwhelming response seemed to be there is the main (causative) one and then features of some of the others.
Alzheimer’s is a type of dementia. It is not the only type.
Complete memory loss is most associated with Alzheimer’s.
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I am not a trained medical personnel. I have literally no medical training. This was baptism by fire. A crash course on… a new life. So basically take this in the spirit it’s given. Here are some of the things I wish I knew, and others that I learned along the way.
First, breathe.
People used to tell me all the time to put my oxygen mask on first. The reality is yes, of course, that makes complete sense. It works on a plane etc. Actually I am sure, if applied, it works. But in the initial stages of this new phase of life… I found, there quite literally was not any time. But, I agree, it is important to take time for you.
Also if you can … and this is hard … but if you can … process it as their evolution not their decline. It is easier said than done. But as with most things in life it’s a journey. And this is theirs.
There is the mind numbing stuff.
The legal:
Is there a Last Will and Testament? Do you know where they are? Is it necessary in the circumstances to consult with an attorney to get advice on the best way to ensure continuity of care? Do you need to apply to the court to be appointed guardian of the PLWD (or as the case may be, diminished capacity)?
In general:
Do you know where all the things are? The bank accounts? Are they jointly held? Who are the signatories?
Important documents - birth certificates, titles (land), insurance, papers for the car, etc.
If the PLWD is able, can you have a discussion with them…about the above, without losing or endangering the trust that might exist between you. Other questions - how do they want to live, along the lines of a living will, or an advance directive (written legal instructions) setting out the PLWDs preferences for medical care, in the event they are unable to make decisions for themself.
If you are the primary caregiver, your Will and your Power of attorney will also need to be executed and to treat specifically with their care in the event of the unforeseen.
The medical team. Have a good General Practitioner in addition to any specialists. I have found that there is a tendency to narrow our focus to the overriding medical issue and neglect the whole person. And in my opinion it is the whole person that needs to be treated at this time.
You will need this to be able to advocate on their behalf with Doctors and other medical personnel.
Start - documenting their medical history. Do you know their blood type? Are there any allergies? What medication are they on and why? Are there any adverse effects to the mental well being of the PLWD. What meds work together? What doesn’t? And remember, you might have to make the decision as between two medicines in terms of the patient as a whole.
As it relates specifically to navigating dementia:
The first is go with them (in conversation) wherever they go. Everything thing else is an exercise in frustration. Go where they lead. For the most part, it truly does not matter.
Don’t ask the PLWD if they remember you. There is no point.
Don’t constantly correct them … so if they refer to you as a son when you’re in fact their daughter or wife or friend. Roll with it.
Communicate to the PLWD what you’re going to do prior to doing it.
When the PLWD is agitated...face in the direction they are facing. How else will you ‘see’ what the trigger is?! Place you hand if possible on their arm to ground them. (Thank you Teepa Snow).
Be patient with them.
In some instances, they process slower. Give them time to answer. Speak to them, not at them. Try as much as is humanly possible to remember there is someone there. They can hear you. They might not always, or at all, be able to speak in a way that makes sense, in that what they are saying is unintelligible … to you. They know what they are saying. And I found eye contact worked best here for me. There are different ways to ‘hear’.
They are going to want to go home. All the time. And ‘home’ changes. It can be their home, or their childhood home, heaven, … sometimes you can figure it out with the context. Roll with it. If you can deflect … we will go tomorrow. Or you are home now. I used signed signs posted on the front door. “You are home. Love Nicki.”
Money is a thing. As primary caregiver there is a strong possibility you’ll be accused of theft. It’s part of the journey. They will constantly ask for their money. Again, just roll with it. Sometimes, if at all possible, using smaller bills, give them. It apparently makes them feel safe.
Try not to say No. Distract instead.
Play to whatever role was strongest in their life. They will lead you. Follow.
Sundowning is a thing. (As is the Full moon and energies around that.) Sundowning occures in the late afternoon, early evening as the sun goes down, the PLWD will be appear to be agitated for no reason. Agitation looks different depending on the personality of the PLWD. I dealt with this by turning on lights at about 4pm to ease the transition through dusk.
Word usage. Think in terms of the context. Does yes mean no or vice versa?
An established routine important. If possible. And lavender is your friend.
Urinary Tract Infections (UTIs) can cause confusion. And the PLWD cannot tell you what’s wrong. You will just experience a change in them without any ‘reasonable in the circumstances’ explanation. By a process of elimination you will figure it out.
Consider repeat traumas. What do I mean??? If they ask for a loved one who’s passed … assess … how will the correct answer land? Remember every time you answer honestly they are possibly reliving a trauma. And this doesn’t mean it isn’t a trauma for you as well. But that’s how the thing set.
Resources
The 36 Hour Day
Teepa Snow
The Alzheimers Association (United States)
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