Tuesday, November 18, 2014

No one ever tells you

When your loved one is first diagnosed with this horrible disease no one tells you about the hundreds of every day challenges. Sure- they tell you to read this, or visit this website, or talk to this group. But they don't just sit you down and TELL you  all of the little things that are most likely going to happen down the road.  And yes, I realize each and every case is a little bit different.
 They don't tell you how to get them to take their meds when they really don't want to.
 They don't tell you how to convince them they shouldn't drive.
 They don't tell you what kind of adult diaper is better then the next.
 They don't tell you how to deal with the mountains of paperwork and the bureaucracy involved in getting them simple care let alone extended care.
 They don't tell you how to convince them they are not going to drown in the shower.
 They don't tell you how to handle it when they have a Meltdown in the middle of a store and they start screaming that you are trying to harm them.
 They don't tell you about the hundreds of hours you will have to spend on the phone on their behalf only to find out that they really really REALLY  need to speak to the patient and only the patient, even thou said patient has Dementia and has not a clue what is being said nor in my case is even able to hear what is being said.
 They dont tell you that the majority of friends and family  will quit visiting or coming by because they will be "uncomfortable" with the situation and not know what to say.
 They dont tell you that Optometrists and dentists are going to get visibly annoyed because the patient cant follow simple instructions, and that they will still charge you for the visit even thou they did nothing to help because your loved one wouldn't cooperate
They dont tell you that  your loved one is going to go through grief over and over again as they remember and forget  loved  ones that have died.
 They dont tell you how often they  wander off.. or how many times you will lose them in the supermarket.
They dont tell you how often your heart will be in your throat in a panic because things are not going well.
Nope-- They dont tell you......


  1. Do you have a care-givers support group to go to? It's where I learned some of the answers to your questions. I had them too.

  2. p.s. they are not diapers, they are "panties" "briefs" "pants" "undies" "shorts"