AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question Hi Mary,
My Dad has moderate to severe Ad. My mom and my sisters and I are just learning how to deal with this. My question is : Dad and Mom are 87. Dad keeps persistently talking about buying a travel trailer, and traveling to many places, and visting family and friends which we all know is impossible. Is that normal for him to talk like that, or is that just part of the disease process? It seems like he is dreaming about all these things he wants to do. Any more information about this process would be much appreciated. Thanks so much!
Answer Hi Patty
Couple of things for you to read that I think may help you understand what is happening to your Dad.
The second is a book - if you only buy one book on dementia, this is the one. It is called The 36 Hour Day, 4th edition, by Mace and Rabin. It's not expensive, and it will really help you with lots of insights into behaviors and tips for dealing with various problems.
Sadly, coming up with unrealistic plans that aren't practical for their situation is not uncommon. Keep in mind, he can't see what is apparent to you - he is oblivious to his deficits, even when his problems are screamingly obvious to everyone around him. It's part of the disease. He has a damaged brain. No amount of arguing, reasoning, confronting, persuading is going to work. His logic processor is broken. Even if you could get him to understand he can't buy a trailer and travel around on his own with your mom, five minutes later he would have forgotten the whole conversation and would be back on the subject. The funny thing is sometimes they stay upset about an argument even when they can't remember what they were upset about, so its better not to wind the person up.
The fortunate thing is that early in the illness a person's executive function is damaged. That is the brain's ability to plan out and execute a complex activity with multiple steps. I say fortunate in that if you think about it, you really don't have to talk your dad out of his plan, because there is no way he can organize himself to make this dream happen.
At one point, mid Alzheimer's, my mother in law was living in a special locked AD unit because she was too confused to live where she could come and go. Her sister also had developed Alzheimer's, and her son brought her to town to visit my mother in law.
The two of them hatched the idea that they were both going to leave their respective facilities, rent an apartment, and look after each other. It was a sweet notion, but totally crazy given both of them were impaired to the point they couldn't manage even the simplest of tasks on their own. However tired we got of hearing about the subject, we knew there was no way they could make it happen. My mother in law couldn't even have thought through how to get herself a cab to make her escape!
Knowing that, we didn't bother arguing or worrying about what would happen if they took action. We knew they couldn't, and we also knew none of us were going to help. We listened and let them talk, we patted, soothed, commiserated, hugged, and then got them onto new subjects or activities. Distract and divert is the motto!!
Despite some people thinking that it helps to correct the person with the dementia, it really does nothing but upset them. Their brain is damaged, and becoming more so all the time so correcting them all the time won't help bring them into your reality. They are doing the best they can with what their damaged minds and perceptions will allow.
I also used the tactic learned with my own children. You don't want to kill the person's spirit or hope, so you can let them have their dreams. You don't have to tell them it's a dumb idea and point out all the flaws in it. You can say, that sounds like a wonderful trip Dad, and ask him about where he would go. Ask him who he would visit. Seque onto past trips and ask questions about what places he liked best. Before you know it, you can get him happily onto a new topic.
Here are 10 fabulous rules for dealing with a person with Alzheimer's, as collected by Dr. Robert Stall.
1. Never argue, instead, agree
2. Never reason, instead, divert
3. Never shame, instead, distract
4. Never lecture, instead, reassure
5. Never say remember, instead, reminisce
6. Never say "I told you", instead, repeat
7. Never say "You can't", instead, "Do what you can"
8. Never command, instead, ask or model
9. Never condescend, instead, encourage and praise
10. Never force, instead, reinforce
I know this is tough, and hard to wrap your brain around. I'm presuming he's not driving any more. Let him make his happy plans. He's not hurting anyone.
I'm thinking of you and your mom and sisters. If there is anything at all you want to ask, fire away, and I'll try to help. Your dad is lucky to be surrounded by so much caring.
