Hi, My name is Chelly and I am 49 years old, my husband is 56 years old and was diagnosed with Alzheimer's disease approx 2 1/2 years ago at the age of 54. I do not even where to begin, He no longer drives, can not cook but still does simple chores like empty the dishwasher, sweep the floor. , which I have to leave a list each day reminding him to eat, drink water, he no longer takes a shower without me setting it up and his verbal skills are declining. I love him dearly but there are days I just get mad, I just lose my patience I want so much for him to be like he was and he cant and I know that. I just think I need to talk to someone that understands, I still have a child at home (senior in highschool) and aging parents that need daily help, I feel like I am losing myself.
Oh, Chelly, I am so happy you found this site! There are several members here who have a spouse with early onset Alz; as well as some who have teenagers still at home. This is a place where no one judges and you rant, rave, whine or scream - whatever you need to do at the moment. Welcome aboard this horrible train to nowhere. I'm sure others will be along soon to welcome you.
Hi Chelly. Welcome. I do not have children at home any longer, but I am 50 my husband is 60. He was diagnosed at 54 this is a great place to vent, rage, cry, and ask questions. I am sorry you had to come here. It helps me daily.
Welcome Chelly but sorry you have a need. Ask any questions you have. Somebody usually has been through it and can offer suggestions.
I'm 54 and my husband is 63. He was diagnosed at 58 with frontotemporal dementia (FTD). We have two children. Our son was still in school when his dad was diagnosed. It will take time for him to come to terms with this. Glad you have some type of help.
Thank you both so much, I now so many people are so much worse off and I am thankful that I have my family, its just gotten really hard lately, For the first year, I knew he had problems but somewhere in my mind I thought he could snap out of it, and then I spent the next year thinking he could stop it. and he cant stop it., I do not really like who I have become, I have to work overtime most days and even though I do not want to stay at work I also do not want to go home but I have to. I cant even go shopping, I have about a 3 hour time frame before he starts to call me (he can only use speed dial now) , he has no concept of my day, my life, he thinks our children are much older than they are , and though I am grateful he ask about them, he does not even know what there lives are actually like, its sad for them and they look at me to fix it cuz mom's fix everything and I cant fix it, I just cant. and then I look at him, gosh if he knew what this disease is doing to him and thankfully he does not and I guess i am grateful for that, hes a person, somewhere in that mind and body there is a soul that has feelings... gosh I love him and this is hard. thank you for listening to me.
Chelly, I do understand how you feel with regard to him being so very aware. It is all part of the disease but is very hard to take. I know that this is my husband's worst nightmare. So am thankful he doesn't know what is going on.
Welcome, Chelly. I'm new too and have already found so much wisdom, comfort, and help here. You'll be so glad that you found this place and these wonderful people who have walked the same path and never judge.
Chelly = welcome. Please do not knock yourself down with 'others have it worse'. We all have our past and present which determine the stress we can take. What is horrible for one person could be no big deal for someone else. Just like the saying 'if you have seen one Alzheimer's you have seen one', 'everyones ability to handle this job is different.'
Stay with us and we will help you all we can on the journey. You have a lot on your plate, so be kind to yourself.
Yes Chelly I second what Charlotte says, we all have it hard with this dementia experience, there is nothing easy about it.
If you need to know just about any answer on anything, type it in the SEARCH box and you will find such a myriad of answers. I am sorry you have to be here, but welcome and this is the best place to find comfort. My husband is 64, diagnosed at 62, and I am 57. His disease moved real quick and I have just this past month had to place him in an Adult Foster home.
Please keep on posting and remember, on this site, no one will put you down for your frustration and pain.
Thank you so very much to everyone , I am just a little worn down today, and thank you for not judging me I feel I have no right to be mad, to be impatient I am not the one that has this disease , but yet I am dam mad what this has done to my life, I am not even done raising my children and I am taking care of my husband and my parents. , and I am resentful, mad... for the first time in 3 years I could not drag myself out of bed this morning , until I had no choice.. and then its like "really don't want to do this today....but I have to do this and I will do this, these are people I love, I feel like they have sucked the living soul out of my life.
Chelly, first of all welcome to one of the best decision you have ever made in the last 2 years! Sometimes I think my middle name is worn down. This is a place where you will NEVER be judged. Please come back here as often as you want to, I think for the first few months I had this site on 24/7 and it was my life line. I quickly lost all the friends that I had here in town because they didn't understand me and they judged me. I only have my H with Alzheimer's to take care of and I feel like the life is being sucked out of my life(what life) anyway cry, vent, rage, hit us with it all and we will be here for you every step of the way.
oh gosh thank you Deb, the friends we have together since right out of high school and have stopped coming over, its hard for them, they are sympatheic but they don't live in this life, they are uncomfortable, who can blame them when my husband cant carry a conversation , the guys he drank beer with, laughed with now looks very uncomfortable with anyone... but me.. and the dog ... we have lost our friends, and most of my husbands family does not even come around which really bothers me, son who is 24 , going to married soon comes over often but just looks sad, he said to me not long ago, it wont be long before dad does not know my name, and I thought not only that, he will never know your babies, our grandchildren, he would have been a hell of a pape" , children and animals used to flock to him, now even the animals sense something is not right
Chelly, welcome. I'm so sad for you to be in this journey....you are so young, it's just not fair. Everyone here so so caring and compassionate...anything you want to know will be here on this site. Take care of yourself as best you can...
Chelly ,it sounds like your plate is more than full. I hope you are finding some way to get some reprieve from all your caregiving duties now and then. I think in the midst of all that responsibility people forget that they actually have to ask others for help.
I am 53 and DH is 61. He was diagnosed 2 years ago with MCI. He has progressed to the early stage of dementia, but refuses to go back to any doctor. My youngest is a high-school senior, too. I dread the day he leaves to college. I guess I’ll have to start talking to myself :)
Patience is not my strong suit, either. Do not be hard on yourself - you are only human and doing the best you can in a horrible situation.
You do have a right to feel mad and we do lose ourselves. My wife got it in her mid 50's too and I'm sorry but it's going to be difficult with your hands so full. Friends and family often have a hard time with this. I was all alone when I found this site and hanging by a thread. Be yourself here. It's safe and everybody here is going through the same thing. Welcome aboard.
Chelly - sounds like you are getting where you have three choices: day care, in home care, or cut work hours. He can not continue to be left alone. It is too dangerous.
To all - thank you so much for listening, yesterday was really quite bad and I kinda was losing it, but today is a better day and so we move on, it is really nice to have people to talk to and I truly appreciate that, as you say family and friends have a hard time with this, his family rarely comes over and basically most of our friends as a couple and his fishing buddies, friends etc have stopped coming over all together , I understand its uncomfortable and it is what is. Thanks to all - I am so grateful I found you all.
Watching this process attack someone we love is excruciating. My husband was dx when he was 45 (FTD). There is incredible support here. Although I've had a couple of meltdowns here I have benefited so much from the wisdom and kindness I have found.
Of course you have the right to be angry! My husband could not stand noise so sometimes I would drive around the block just so I could scream for a few minutes.
Welcome to this site. You will find much help here from those of us who have been here for some time. You can feel free to express yourself as you need to and fear not that you will be judged. WE all have good and bad days. You are not alone.
abby, I do the same thing (scream) it is a very important part of our road we are traveling. It is a release of emotions! A good psychiatrist would use that method of treatment. I sometimes have way to much anger to express in words and aside from this site, no one to express them to. Mary, talking to yourself is not such a bad thing! haha! Not really what we want to do but...just don't argue with yourself and you will be fine! :)
Welcome to this site, Chelly. I am fairly new here too, but have learned much information about dementia. My husband has advanced FTD with mild/moderate alzheimers. You will find the people here very helpful and non-judgemental. I am sorry that you are going though this as we all here. Take care and ((hugs))
Welcome to my website. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now 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". Since your husband definitely falls into the Early Onset category, please check the 4 sections for EOAD (early onset AD- now called YOUNG onset)members - two of which focus on the young teens whose parents have EOAD. 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.
welcome Chelly.. wow your cup runneth over dear lady. most of us just have an AD spouse and not caring for young children or parents on top. you are very young as well, and we know how hard it is to deal when you have all this outside stress of caregiving on top of daily issues. hope you find support and commadery here among those who know exactly how you feel. divvi
Chelly, I'm somewhat new here myself, but I welcome you. I had a "true confessions" post on here a couple of days ago, felt kind of guilty about posting the things I was feeling, but the responses have been so helpful.....kind of a release for me. My hubby wasn't early onset (at least I don't think so, not sure what age qualifies for that!), he was diagnosed 3 years ago at age 75, but as I look back I know it was happening long before that age. I've had many a personal battle with myself about my negative feelings & responses to this disease & at times it seems like my heart is dying little by little. Joan's blog is becoming a safe haven, with no judgement, scorn or ridicule.
Welcome Chelly! My dh also has EOAD, but we're a few years older than you, but not much. You have found a safe, non-judgmental place here. I don't post much, but I do read the Boards and all of Joan's other great information on the home page. (btw, it's also a great place to "vent", and we all need that from time to time)!
Chelly!! Welcome, so glad you are here!!! Oh and trust me I totally get what you are saying! It is so hard, hubs is 48 and was diagnosed 2 years ago. The disease is moving fast....he needs someone to be home with him during the day now while I work. We also have 2 busy sports minded teens at home, son is a senior and daughter is a sophomore. They both have so many activities to keep up with it. It's all so crazy, his verbal skills are tanking and so are his eating skills, he can't keep a sandwich together spatially when he eats and just makes such a mess. But I am fine with that since he is still independent with feeding. :) I have learned to just let stuff go and not let it get to me.....not always easy, but certainly a means of surviving this horrid disease. Hang in there, I know it's hard, at this age! I am also 48 btw.
Everyone thank you so much for your advise and words of encouragement, I do realize that I do need to make some changes, its just been crazy and its all I can do to get through the day sometimes and make sure everyone's basic needs are met. I spent as much time as I could each night with my dad this week as they are only giving him a few weeks to live, met with hospice, nurses, doctors and learned how to give morphine for his final days (he wants to die at home and I respect that) , my husband has been worse in the last few weeks, most likely due to my lack of attention, there are only so many hours in a day. I have been attending meetings and learning about the different options for care and I have been putting it off, thinking its not that bad, but I know it is. , and I will have to make some choices soon, dam this sucks !
Yes, Chelly, AD just plain sucks... but as you've already learned you have come to the best internet site there is for information, support, and to learn how others handle similar situations. Whereas Clare was also diagnosedwith EOAD nearly 4 years ago with EOAD, she had just turned 63 ... and unlike you, we never had to also deal with children at home or aging parents ... so my situation is a lot different. Hopefully, wisdom on this site will help to get you through a little better than would otherwise be true. We've all learned a lot from others and even though I've been coming to this site for more than 3 years, I still sometimes punch up old discussion threads and previous blogs now and then to learn a thing or two.
I found this site recently, as well and it has been a Godsend. Everyone cares for each other, and can relate to what you are going through. Blessings on you as you go through this journey.
Hi Chelly. Sorry to hear about your tough days. Try to get used to taking one day at a time. Easier said then done, I know. My wife was diagnosed a little over a year and a half ago at age 52. I am 47, our kids are 13 & 17.