He is physically very healthy, 78 years old and has been placed on vitamin B1 and Aricept 5 mg, to increase to 10 mg in a couple of weeks. He is better at times than others. I am only beginning how to learn to be a caregiver until is very overwhelming right now as I wonder about so many things, mainly who is suffering worse, hi or me? Thanks
I watched a video by Teepa Snow and hope to find them all. Wow, what help is there for us, I am floored. I ordered the book "the 36-hour day" and started to read the 500 pages yesterday. There is so much out there, I need to gather it all as I travel this journey. Sorry for my reply in this answer column, but a thank you again from the bottom of my heart. I embrace all of you as my "travel companions" and just a short time ago I didn't know you existed!
I have rarely seen a question on this site answered so well and so thoroughtly, but your question has not been answered specifically.
You both are suffering, in the beginning my husband suffered more than I . He hated losing his memory for things. As his disease progresses, my suffering increased as he lost me in the crowd. As he no longer saw me as his best friend, I became very lonely. I suffer each day from his absence--although he is still alive and physically healthy. HOWEVER, if you listen carefully to the advice already provided, the difference is, You will survive to resume your independent life. It may take a long time.
My husband has been diagnosed for 10 years and I am just beginning to invest my energies in projects and friends outside of my caregiving role.
For you: make sure you get away from the house from time to time. Send your husband to an adult day care. Take the rest of the day off. Hire a companion for the day (or once or twice a week).
For him: Make sure you know how to speak to a person with dementia. Spend some time at that day care you are sending your husband to. Learn about how to make him feel better when he asks you if you've seen his parents. Or what to say to him when he packs his bags and says he's going "home." How to get him back into the house when he walks out the front door in the middle of the night in the middle of the winter with only his pajamas on.... you will need those skills... simple skills, but very important.
Friends have vanished and its very hurtful and I'm taking that personal. My husband's daughter has never lifted a finger to help and whenever she calls it is to put negative thoughts in his head. It's very difficult. The best book I have read is Surviving Caregiving by Dr. Woodson. There is a chapter I read over and over to remind myself that it isn't me. Read everything you can and reach out to the available resources, there are many. Screen everyone very carefully and ASK FOR HELP. Geez, it's hard but I'm finally learning, I won't live without it.
Bless you
"I don't feel it anywhere," "Where do I - what do I do? Like, what?"
caregivers learn to speak dementia as a second language
people with dementia continue to have the need to participate in activities...to do things...just in a manner that is appropriately simplified and supported by caregivers. quoted from MindStart
tinyurl/abtwfrn
Buy a copy ASAP: ""Kisses for Elizabeth"": A Common Sense ApproachTo Alzheimer's and Dementia Care
confabulations are a major annoyance — when friends, family, and the medical community take everything our loved ones say at face value, no matter how false we know their statements to be alzcompen/?p=293
Be sure to search for : "Alzheimer's Compendium" and "Caregivers' Newsbasket"
Don't miss browsing the the alz.org web sites
Planning ahead from alz assoc archives
http://www.alzconnected.org/archive.aspx?g=posts&t=10988
The thing I had the most trouble with was getting my family to understand YOU CAN'T CHANGE THEIR MIND!!!
Their brain doesn't process things correctly any more. In their mind, what they think, is as real as what you know to be true.
The most important thing is to look after your own health first. Make sure you do not get depressed because of your husband.
What I know today vs. what I didn't know 3 years ago could fill a warehouse. There ought to be classes.
You learn by doing and using this site to search for topics and ask questions. There is a very strong support community on this site, full of folks who have seen and been through utterly everything.
Some things I learned -
1. Make sure you get your rest. Your inclination will be to stay up all night and do everything by yourself. This will put you in the nursing home faster than your husband. You will need night help, maybe not today, but it will happen, so make a plan and decide if you can get in-home help.
2. Plan ahead for the next stage of need. Educate yourself, educate yourself, educate yourself. Learn how to recognize Sundowning. Learn about the next "stage" and its signal behaviors so you don't miss them.
3. Get your finances in order NOW while you still can. Talk to an elder law specialist ASAP to understand what legal documents you need now so you can take action later and how to protect your assets and property.
4. Keep a journal. Even if it's really short. Write down what happened today and if there was anything that happened that got your attention. This becomes your record book to use with the doctor, so you can see changes that happen gradually over time. A daily reflection is good for your mental health and there is something really therapeutic about writing it down. You are going to need an outlet for your frustration with the disease, your husband, family who don't understand, and friends who evaporate like mist.
Please come back to the site often. It's a great place to vent, find answers, and resources.