Hi, this site was recommended and I am so very happy to have someone who understands to talk to. My name is Susan, I am 53, and my husband Jim, 61, was just diagnosed last week. I am exhausted, and heartbroken. We have only been married 5 1/2 years. I am angry and sad that all of my worries over the last 5 years have been validated by this diagnosis. Aghhhhh. OK, I'm tired, I am also caring for my Mom who loves with us and is a usually a very healthy 76 yr old, but is recovering from a serious lung infection. We are also raising our 9 yr old grandson, who has some frontal brain lobe issues. PLUS, now I have strep and the flu. Jim became very depressed and anxious a year ago and had to stop working, that is under control, but in November he came down with pneumonia and in December was diagnosed with COPD, (Reactive Airway Disease and Chronic Broncitis). He has really gone down hill from there. More to come later. Thanks for "listening" Susan
Welcome to a group that will listen and uphold you. It's good that you found us. Your situation is much more involved than mine, but, still, I can empathize and pray for you and your family.
You have found the right spot. You will find alot of resource information on the home page on the left side. Just scroll down and you will find alot of good info When you need to vent, start a new discussion on what is pushing your button at the moment. You will find that many people on this site can relate to what you are going thru and have good advice Welcome.
Oh my Goodness, Susan! What a load you're carrying! You definitely have found the right spot here. Joan, our leader and loving supporter, will be along shortly to personally welcome you.
Susan, you have come to the right place with people who welcome you with open arms and lots of hugs. You are going through so very much and at such a young age, my thoughts and prayeres are with your family.
Joan does normally pop in to give newbies a personal welcome. But she's been off on a caregiver cruise, living the life of Reilly, and is now scrambling to unpack, get things in order, figure out which end is up, and try to adjust to "real life". While she was gone, I was the Officially Delegated Interim Alternate Welcome Wagon. Since she hasn't officially undelegated me yet, and to give her a tiny breather, I'll do the Official Welcome, and then she can just say "hi".
Ahem.
Be sure to check the home page -- www.thealzheimerspouse.com. It's full of interesting info -- I find something new every time I browse there. For example, in the menu on the left side, there are many topics filled with information. Joan always suggests that newcomers to the site read "Newly Diagnosed/New to this website" first, and then check out "Understanding the Dementia Experience". That's an article written by Jennifer Ghent-Fuller, and an excellent description of what is going on in our spouses' minds, and what we can do to help them feel safe and loved. When you get a chance, scroll through the "previous blogs". Joan starts her own "threads" as blogs, and they often end up being discussed on the message boards. I'm sure you'll find many topics you can relate to.
Joan started her own Zazzle store recently, at our request. There's a link in the menu, and another in the center of the page. The store has some really neat items, specially designed for us; and if you like, you can even design your own. Also, if you ever need to shop on amazon.com, come here to link into their site, and Joan will get a teeny commission from your purchase. (She has done everything -- set up this site and run it, set up the caregiver cruises, lobby Congress -- without any compensation. We need to make sure she finds some source of income so this site will stay here for us!)
Information on the home page itself is updated frequently with new blogs, news and/or information updates, so many of us check there every day.
You can search for topics of interest on the message boards, using the "search" button at the top of the page. Enter a key word that might be found in the title of the thread (click on the "topic" button) or in the posts (click on "comments") Note: this particular site will pull up any comments that have the key word anywhere in the post, even if it's part of a longer word, so you can enter, for example, "myoclon" and pull up posts that mention myoclonus and myoclonic jerks.
You can search for posts by a member, by entering the member's name followed by a colon, and then clicking on the "comments" button, and then the "search" button.
There are also several fun threads where we hope you'll post -- "What are the Age Groups?" (for the ages of our spouses), "Ages of the Caregivers", and "Where are you from?" And then there's my favorite, "Before dementia what did your spouse do for a living?"
Another great thread you'll want to be sure to read is "Caregiver Tips - Things I wish someone had told me back in Stage 2-3."
The people here are wonderful, as you're beginning to find out. Let us know what we can do to help you.
Welcome Susan. Validation in a weird way is a relief, I don't know why but it helps I guess to have a answer for all the weird stuff. Hang in there, take a deep breath as you have so much going on. Wow! Take care of yourself first the rest will come later. There are several here who are still raising children as well as going thru the Ad journey, I can't imagine. You guys are some really strong people. Best of Luck! Rk
Thanks again Sunshyne and joang, I can't say how comforting it is to be here with you all. I felt so all along. Funny, but even though I had such strong suspicions, when the diag came I fell apart. I felt like some took by pretty basket of Hopes and Dreams and threw them to the wind. Susan
Susan, those hope and dreams may be gone, however you can make new ones given the realm of his new world, your mother's world and your son's world. You have three times more on your plate than the rest of us, and we'll be here for you whenever you need us. Once you have mourned the lost hopes and dreams, realize that you CAN have some hopes and dreams for a while with him. They might be in small dreams, but you will have to be the one to make them for both of you. You can do it. We still have laughter, and fun, and hugs and kisses along the way. You learn to take what you are dealt, and try to make it as pleasant for you and for him as you can. It isn't easy, it's hard. But it is doable. Welcome to our group. Here's a big hug for you! ((((HUG))))
I'm sure you are right, Mary, but right now I mostly cry. I have found a wonderful therapist and her mother-in-law had AD. I am trying to go hour by hour and make the best of the day when a am able.
Question, DH has been sleeping a good 8-81/2 hrs at night and an additional 4-6 during the day. Anyone have experience with this. He stares at the tv and then dozes off all day long. He might go out and get the mail or shovel a bit of snow, but that's it.
My husband sleeps 10-12 hours a night. He says it is the prozac he takes at night that makes him sleep so long. I say he is bored - cause if he has a reason he gets up. He used to fall asleep using Dagwood's excuse (from Blondie cartoon): I need a nap to have the energy to make it to bed.
My DH would also sleep nonstop if i let him. some meds do cause drowsiness as well as boredom-getting them up early and active or some exercise seems to work marvels with DH he is up most of the day now and very readily falls asleep around 8:30pm nitely without sleep aides. just taking his arm and walking around the house works to get the blood flowing. or if you can up/down stairs-after that hes up and being his regular hooligan self:) divvi
There is no win-win in this situation. Some stages sleep almost all of the time; some stages almost never sleep. Since my husband is in the almost never sleeps, only doses when bored and stays awake most of the night (even though we have tried four prescribed medications and melatonin with and without magnesium), I can state that I don't like EITHER one of these stages!!! Of course, there is really nothing to do except wait until next week when it will change again.
Susan, whatever they are doing that bothers you will eventually go away (unless you are Sid with wanting to drive) and be replaced with other symptoms. You will have to learn to go with the flow....this coming from a woman who was known as a brick wall.... <grin> boy, have I changed!
Susan, welcome here to this wonderful place. Hope to get to know you better. You will find us entertaining, loving and non-judgemental. We can hold your hand.
You all are so terrific! Up here in Maine there are not a lot of support groups, only 1 caregiver group that meets ONCE a month, like that's gonna help!!!! Get real, I need hourly support :o)
Susan, Hang in there. This board will help you feel not so alone. I am 54 and DH is 55 dx'd for 5 years. It sounds like alot of people are leaning on you. Do you have any friends or family that you can lean on?
My daughter just moved up here last fall and she is terrific. My son is in college but is my spiritual life line. Another son is mentallly challenged but is a source of constant optimism. DH's oldest daughter is the ice princess and the younger has vowed to call weekly so we'll see. My YaYa's are 4 long time friends who have gone through life with me since high school. We have been through sooooo much together, but this is the worst. Unfortuately they are all 3 hours away. We call, text and email, but right now they don't know what to do. They did manage to come up with a great surprise. Three of the girls rented us a chalet in the mountains for 3 nights a week from this Thursday. I pray that things are calm and we can go. I know I can "Let Loose" and laugh, cry, and complain and they will love me anyway. We will eat, drink, (too much :o) and watch chick flicks. I can't wait, hope I can go and not worry. My daughter and her 5 yr old will come and stay over. Oh how I love those crazy women, but I'm finding that unless you've been in our shoes, you just can't understand.
My husband also was dx with EOAD, and I've done double duty caring for him and my 94 year old Dad. The overload of caring for parents/children along with an AD spouse magnifies the problems all around. One thing I've found that helped was involving my brother more in my Dad's care as time went along. If you have siblings, they need to get involved and take some of the responsibility of caring for your Mom off your shoulders. Another issue that comes with EOAD is that many family members and friends are still working, and thus have little time to help out. Haven't found a way around that yet! So glad that you found this website--it will really be invaluable for advice. By the way--ditto on my DH's daughter--love the term ice princess--so apt!
OK, I'll be over with a bottle of BareFoot Bubbly Pinot Grigio and I'll bring my 9 month old twin kittens, Peanut Butter and Jelly and my 11 year old Lab mix who thinks she is their mother!!!!! It's hysterical, they make me laugh and bring comfort to my DH.
When my wife was diagnosed I put my head on a friend's shoulder and cried big tears. I have not cried but two times in my adult life (one was for my mother when she died). We are all on limited time. When it is good, roll around and wallow in it, when it is not so good, remember the good times. We are not to the really bad stage yet, but I know it is coming, and I fear that day. dave
They were found by someone in a box on the side of the road. We adopted them from the shelter after losing our two cats ages 14 & 15 over the spring-summer. We opened the kennel and these two pure black balls of fur bounced out of the cage on onto my two grandsons, Dylan age 9 and Diego age 5! They rolled around on the floor with these two nutcases and we knew they were the right kittens for us. As you can tell the boys named them. Peanut Butter is the nighttime cuddler and Jelly is alway on someones lap during the day. Dylan carries PB aroun on his shoulder like a baby. It is too cute.
I hope Deb comes and makes margaritas for those who want them. Peanut Butter and Jelly. What a hoot. I can bring extra dogs and cats in case someone wants to borrow briefly. Dwgriff, you are one smart guy.
Dave, I so know what you mean. Jim is into stage 5 I believe. It is so heartbreaking. He was such a grump this morning. Then he pulled me to him this afternoon and gave me a nice kiss. You just never now what to expect. What I am really beginning to worry about is Dylan our 9 yr old grandson, whom we are raising. Papa is always criticizing him. I've tried to talk to him about it but I'm not sure how to protect Dylan. Any thoughts from any of you would be most appreciated. Meanwhile my Mom is back on her O2 and not feeling well, I fear she has caught this flu from me. I called the VN to come over and check her. Her sats were down to 84 ambulating and 88% resting. I'm slowly regaining my strength, I think.
I've got my blender and ready to go. Sorry no cats or dogs to bring. Haven't been able to bring myself to get any more pets since we lost our border collie/lab mix ,Pepper, in 2006 (she was 14) and our longhaired calico, Maggie, shortly before that (she was 14 also).
You all are invited to our nightowl party tonight after 10 p.m. est. I was going to have it last night but fell asleep before Mawzy showed up a few hours later, so I told her it would be tonight and I will furnish the popcorn. Anyone able to sleep during party time will be excused including the hostess.
Dear debq12958--I was all set to come to your party. Are you SURE no kitties or doggies? Noche is already very disappointed. What time does this affair start? Can I bring anything. Hate to ask, but can someone pick me up? Don't drive anymore, you know. ::))