My husband was diagnosed 3 yrs ago. He is also quie hard of hearing & refuses to wear his hearing aid. He will have catarac surgery soon so that will help the eyesight. The hearing drives me crazy!! My throat is always sore from yelling.I am not a bossy person so have a hard time telling him what to do & always think maybe he would like some say in different matters. He has recently started keeping me up during the night so I am not sleeping. He sleeps during the day. He has always been depressed so he doesn't have friends. I am a happy person by nature. Try to see the good,funny, & love happy people,laughter, so I find I am getting depressed. I don't let anyone see this. We have 3 sons who are great they have very full demanding lives. I feel very alone. I have spinal stenosis with spondylosis, & colitis. Have lost 20 lbs weigh 95 now. & alot of pain. Can't tell anyone, wouldn't matter anyway. I pray & wonder how I can get through each day. We don't have extra money for hiring someone to come in. I would love for him to just go away for half a day once on a while/ Just found this blog it may keep me sane. Thank you Gail
Welcome Gail. Sorry you have the need to be here but if your husband has dementia this is the best place to be, EVER. I feel the same way you do and have found myself being depressed the past couple of days and I never thought of myself as being the depressed type. DH was was diagnosed in September of 2007 and I wonder sometimes how long I can go on. You can post anything and everything that is on your mind and someone will be along to help. Hang in with us and maybe you will start to feel a little better. Take care and God Bless.
Gail, You may want to choose a screen name that does not have your e-mail address in it to protect your privacy. In any case, I want to welcome you to my website.
You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". If it applies to your situation, there are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
When you feel comfortable, please tell us about yourself and your husband - ages, when diagnosed, etc. We are here to help and offer support.
Welcome Gail. Sorry you had to join us but this is a good place. My hb was diagnosed in 2008 and not that far along - yet. There are others here that have gone through or going through what you are with being up at night. Also, ones whose spouse is hard of hearing and refuses to wear a hearing aid. They will be along. There are also threads on the subject. You can go to search, use advance search (I get best results with that) and find it or I am sure people will bring the threads to the top for you.
Stay with us and we will help you through. Where do you live -what state or country and how old are you and your spouse?
Gail, my wife is also hard of hearing, but apparently not as bad as your husband. I don't have to yell at her since she can't follow directions anyway (stage 6+). A couple of years ago she started taking her hearing aid out. Then one day I found her sucking on it like a piece of candy. She had bitten it in half. At that point I decided no more hearing aids.
She also needs cataract surgery, but she is constantly rubbing her eyes, so I don't see how we would manage during the immediate post-op period. Thus, no surgery.
Gail, I am sooo glad that you found us. We are here to help one another out, listen to each other vent, give lots of cyber hugs and support. I hope you get to read Joan's blog for today called separate lives. It is very easy for me to take on my husbands mood as well because day after day I am with him sometimes going weeks without being with friends for more than a few minutes at a time. I am not a party animal but I know what you mean by being a positive person and getting depressed because your DH is not. Just to let you know also this support group will keep you sane.
Welcome to the site but sorry you have a need. I believe you will find this a great place for support and information.
Are you in the US? If so, is your husband a vet? If so, have you checked with the VA hospital in your area to see if they have anything available to help you. My husband goes to day care three times a week and the VA pays for most of it. Depending on your income, they could pay for all of it. Call your local VA hospital and ask to speak to a social worker.
My husband who is now 61 was diagnosed over 2 years ago with FTD (frontotemporal dementia). I'm 52 and we have two children. Our daughter is near us but pretty busy with her life and our son is teaching in South Korea for the next year so no help there. When he's not at daycare, he is with my 24/7.
My husband is up and down all night, too. Wanders somewhat, too. Now that it's winter he walks all over the house. Gets into things, moves things, etc., etc. SO, I have double dead-bolt, keyed entries at outside doors. Lock every room and the pantry. At night I put a bicycle lock on the fridge/freezer doors because he was taking stuff out, putting it in cupboards or wherever, leaving ice cream on counter...you get the picture. I've considered locking him in master bedroom at night so he'd have access to bathroom.
So, welcome to this site that will help your sanity and give you ideas for getting through this long journey. At least it's helped me (and is helping). Try to look on the bright side once a day at least even if it's a search!
Hi Gail, Welcome to the "family". Sorry you have to be here, but as others have said, it's a good place to be. We UNDERSTAND! So talk to us, ask us questions, vent, laugh, cry etc. We are here to support each other. I would have gone crazy if I wouldn't have found this site.
Hello Gail. I wish that we could just wrap our arms around each other. I too have a husband who gets up at night. Last night I gave him "breakfast" at 2 a.m. I thought that a full tummy might help him go to sleep, which I think helped. He sleeps in the bed until about midnight or 1 a.m., but after that, he just can't seem to stand it and prefers to sleep in his chair. He puts on his coat and hat to keep warm and I cover him up with a blanket. Then, I'm so awake that I sometimes get on the computer for awhile, etc. Sometimes he turns on the bedroom light and sorts socks or rearranges the closet. He has no concern about the fact that he is disturbing my sleep. I so relate to how you are feeling. I have two daughters that I see each week, but they are busy and they certainly do not comprehend the depth of my misery and sorrow. My husband doesn't understand what I'm going through, but he does hug me and try to console me. I told him the other day that I know that if the shoe were on the other foot, that he would have handled it much better than I do. I feel like such a wimp.
Jeannie & Gail, Neither of you are wimps! Look at all you do for your DH everyday, 24/7. No one knows (except those here) how much time, effort, love, and sorrow we put into the care of our spouses and yet we carry on. We all have bad days but we trudge on. In this age of "me" we are the ones who best uphold our vows "for better or for worse, in sickness and in health". Some get the "better and health" and those of us who are strong enough get "the worse and sickness". We all can do it. We just need the encouragement of others and lots of prayers!
Gail, welcome. This is the best place for information, help and a place to just vent. We are all on (or have been) on the difficult journey of caring for our LO's with dementia. My husband was diagnosed 2.5 years ago at age 58 with FTD and I was 57 at the time. Like you, I too have a chronic illness which makes it difficult to totally care for my husband's needs, but luckily he is relatively self sufficient at this point. The suggestion of looking into the VA if he's a veteran is a good one. If not you may qualify for some state/county programs through the Area Office of the Aging. I would also contact the local Alzheimer's chapter for information/referrals. They also have grants for respite care you could apply for.
Gail...do not despair..Finding this site will keep YOU supported and strong, and you can be assured that I will give you all the bad advice I can find. There are many on here that have multiple disabilities, and their strength in caring for their spouses is truly inspirational. ADVICE: 1.On the hearing issue, I advise not to yell....Just whisper, and use body or sign language. As he discovers that he still cannot hear you, he may suddenly decide to use his hearing aids....Most men have selective hearing concerning their spouses...It is a male trait....you can hear someone whisper YES, but will not hear someone shouting NO. If you really need to communicate, stand in front of him naked. ALL men respond very well to this, and you will have his undivided attention, and he will be listening. 2. Keep the caregiver healthy. An injured caregiver will have a very difficult time caregiving. If you get depressed, you need to laugh and smile...Stick smiley faces everywhere, paint your face in clown colors, run around with your clothes inside out, speak in OB (take the first letter of a word, add it to the end, and ad OB. for example "Ouyob reaob milingsob = you are smiling...) or do a rain dance in front of the weather channel...do whatever it takes to put a smile on your face...ALZ patients react immediately to body language or visual weirdness. 3. Eat chocolate!!!! At 95 lbs, sneezing may blow you off your feet. Chocolate not only will help you with your weight, but also with your smile...and You can also use it as lipstick. Chocolate is also good to lure other females to your home....Hide some in the laundry, in the stove, under beds, and you will find that some of the housework will also get done by them..... 4. & alot of pain. Can't tell anyone, wouldn't matter anyway. I pray & wonder how I can get through each day. a> You can tell us all about your pain, and troubles, and it does matter to all of us. We cannot change any of it, but we will be sympathetic and caring. b> We all pray, and wonder how we can get through the next HOUR, let alone the whole day. You are fortunate to be able to last so long. c> friends??? One of the bad side effects of an Alzheimer's diagnosis is usually the loss of all friendships, including your own. This is the nature of the disease, and it cannot be helped with medication. (I did hear that you can have lots of friends if you buy enough beer and liquor, and if you give out big sums of money, but I have yet to test this method). 5. Accept the blessings of this site and its many amazing members. We have every type of caregiver possible . a. Survivor caregivers - those who traveled the journey and survived the unbelievable experience. b. Professional caregivers- those who are so great at it that we should be paying them. c. Outstanding caregivers- those that are doing the impossible and succeeding very well. d. Average caregivers- currently, we have none of these. e. Horrible caregivers- I am probably the only member of this group ever. 6. Money- We have a fund available, and it is available to all our members free of charge. You have 30 billion dollars in your personal account, and you can spend them, share them, or give them away to other members. However, these are emotional dollars, and when you reach a low balance, we will add more funds to your account. Unfortunately, this currency is not recognized by any country, banks, or retail merchants. This bank is open 24 hrs a day, completely free, and also completely worthless in a monetary sense, but the support you will receive is truly priceless. Think of it as an emotional debit card...without any fears of overdrafts. 6. Finally, believe everything Marsh says, mostly everything from other members, and NOTHING about what I say.
I think Phranque's post should become the new welcoming letter. It has a lot of truths in there plus humor and will warn all about Phranque - a man we are very glad to have with us.
After reading most of the new comments posted, I am going to try very hard to change my attitude and find a way to fight depression without medicine. I am thankful for: 1. The home my husband's hard work provided. 2. The doctors who help me cope with his problems and the many many people seeking a cure or at least something that helps. 3. My faith which supports me even when the church doesn't. 4. This site where we can share our good and sorrowful days. 5. Phranque's wisdom - have to get my chocolate. Only problem is dogs can't have it, so no way to hide it and hope he'll mop the bathroom for me. 6. Our Scottie who loves both of us without judging. 7. The computer and the Internet which allows me to keep his friends updated. All of them live in other parts of the country, none have this AZ, but they try to understand. 8. Dog's upcoming recovery from surgery which will force me to exercise as I help him (see I changed it from complaining that it would all be my problem).
NancyJ---you made my day!! Attitude makes the difference. Find pleasure in the sorrows, find goodness in evil, turn the bad into the good...and if that does not work, take lots of meds or alcohol!
Welcome Gail, by now you have realized that you have fallen in amoung a wonderful, supportive, and yes, crazy, bunch. Welcome, we will always be here for you. Arms around, Susan*