Recently my husband was diagnosed with moderate/severe Alzheimer's. Is he suffering or is it just me and our grown kids?

I had taken the advice to keep a journal and then my writings became a book of my experiences and others who are or were caregivers to folks with dementia who attended support groups I was a part of or lead. Keep the 36 Hour Day nearby and use it as a reference guide as your husband's disease progresses. I used it much as I used Dr. Spock's book when raisng my children.Many caregivers read my book Put That Knife Away and feel less alone with their situation- A kind of support group between 2 covers.

I found my answer in your question about your grown kids also suffering. Family is priceless when they stay close going through this.

You did things right, Luv. You have received such excellent advice that I don't think I could add anything more. I liked very much what putthatknifeaway wrote, because I have found it is so true. My mother has dementia. Initially it was hardest on her as she struggled to keep control and some normality in her life. But as she drifted away, it became harder on me trying to reach across a void to her. I think the suffering is equal on both sides, but we become more stressed by it as time goes on. Do you have family that will be there with you to help?

Thank you for all of your beautiful answers. I can't believe this site and will keep it nearby daily. You can tell I am not computer savvy, and this is probably not the place to reply. Another thing, I want these repli s closely for me to read and re-read, hope I don't lose them.

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!

Loved Sandwich 24's feedback. Great advice. Don't think a psychologist could have given more thorough and truthful info. What a wonderful website. Just remember, every circumstances being a caregiver are different. Every day, every minute, every situation is at times funny, and then heartbreaking. Learn to laugh, learn to see a positive ray in daily situations. And, if you are religious, pray, pray your heart out and ask for grace and patience. It truly helps. Everything changes---yes, once good friends disappear, family members (if one has family members) are distant and void of caring. Learn to be strong and seek advice and help. Call your church, call the Alzheimer's Organization or simply email this website. The main awareness that took 9 years as a caregiver was to realize nothing will change unless the caregiver is motivated and strong enough to make changes. You can worry, cry, scream, beg the doctor to help, call family services, but it is YOU that needs to 'steer the ship.' Because YOU are the decision maker...no one else. And please, do not be like so many caregivers. They are beyond exhausted, some I've talked to have gotten to the point they do not care if they live any longer. To answer your question directly, YES, you are suffering, the patient is suffering, and loved ones are suffering. You have been diagnosed with second-hand Alzheimer's. And you will have Alzheimer's and pay the price as much, if not more, than your husband. Good luck. You will be in my prayers. Hope you keep us posted on your situation. We really do care.

Dear LuvRLabs2
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.

Two things come to mind, one for you and one for him.

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.

LuvRLabs2, Bless you and your family. Everyone has provided great comments. Oh what a journey! I've learned to live structured from day to day. I think the most difficult part is watching someone you love go through this illness. I think everyday, I just want him back, knowing that will never happen.

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

When Glen Campbell was told that he had Alzheimer's he replied:
"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

All excellent advice especially sandwich42plus.
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.

What you have is great advice spoken from people who have lived the life of a caregiver of someone with Alzhiemers. The only additional advice I would give is to consider a male companion for him for you to have time away as much as you can afford. This could be for your hair appts, lunch with friends or whatever is normal for you to do. This will help with your sanity. This caregiver for him could be family if you have any that would care to be with him or could be from an agency etc. Know that what he would need now in a caregiver will change as he changes. The big message here is to get away and have your own head space.

This is just the beginning of a long journey. It is part of your life experience. Download the 3 free helpful guides provided for by this web site. Treasure the good days but do not be frustrated when things are bad. Find ways to relax. Watch out for your own health. Make sure your caregiving role does not drag you into depression. Do not look at it as who is suffering. Just remember that people with Alzheimers lives in the present and rarely thinks or worries about their future. They tend to forget unpleasant things moments after it happens. As a caregiver, do not dwell on things that the patients do wrong. Treasure the moments you spend with the patients. Do not get carry away with all the things they do wrong. Join a support group to find out how others handle their caregiving duties.
The most important thing is to look after your own health first. Make sure you do not get depressed because of your husband.

I have to agree--go see an eldercare attorney and get your finances in order NOW. You may have to get him on Medicaid later for nursing home placement. Maybe not..but you never know.

That is a great response sandwich42plus, very thorough. One of the hardest things to deal with is, as you say, the friends who evaporate like mist. That has been hurtful and unexpected and makes the caregiving task very lonely.

Bless your heart.
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.

My opinion, your husband and everyone who loves him. This whole journey is a learning experience. What works tiday may not work tomorrow. If you are able to get some help with the caregiving I strongly suggest that you do that. Don't stress about the future, take one day at a time.