I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Can any of you relate or am I just the slowest spouse on the face of the earth when it comes to moving foreard away from AD life?
Joan, you are who you are and any pace you want is good. Your choice, your pace ..........accepting a change, making a move to learn to play a new game ............all positive, all good. And your scarfs are beautiful, they adorn the necks of the ladies I work with, I told them they were made by a very terrific lady who's carring for her ill husband and that they were made with love. They wish you blessings back. Enjoy this beginning steps, they make the next ones easier.
I hear you...so I have my Eucharist Ministry activities and Lector at Mass and I do hospital rounds to take communion to the sick at the hospital a couple of times a month...am team captain for the latter one and there are 4 of us on my team...and I have my Thursday morning hike and coffee and gab session with my GF, the one who doesn't really get ALZ but is learning....there is hope for them... But yeah, yesterday as I was taking a look at the house outside I started to feel down..we need a new asphalt driveway..DH would not do it a few years ago when maybe a seal would have done it now we need a new one, dig up the old and redo the whole thing...then there is painting the house again...overall it looks good but there are a couple places along the kitchen wall where the paint seems to be pealing...then there is that damn grass where now it is full of crabgrass, barnyard grass and who knows what else and the gardener we have is so stupid about this stuff at the moment I am grateful at least the yard looks tidy..Then I count up how much it will cost to do all this now and how much it will cost to put him in a NH if it comes to that and how will I manage it all then WE won't qualify for assistance based on his retirement income..so what to do first..then I get to feeling like a Smurf..blue around the gills at it all. It all seems so useless and fruitless and hopeless. Today I have my why bother hat on I guess.
Joan, it happened to me almost the same way. It was if we had changed places....he became more withdrawn and introspective, and I was the outgoing and full of fun partner. It must have snuck up on me because other people saw it before I did. I became the joke teller, the speaker when needed, and the one who could do the quick math to figure out savings while out shopping. That shocked me....
As he faded away I glowed brighter and brighter.....I think in some way it made the path easier for me. He changed dramatically....so did I.....we didn't fit into our "old" mold....we had evolved.
Thanks Terry. I am so happy you and the ladies like the scarves. My first idea of moving away from AD was to attend a knitting class on Friday mornings. It's an open ended class - all questions and problems answered and demonstrated. HOWEVER, it is 30 minutes away at 10 AM. That is the same time as water fitness here, and Sid loves to go to that. He cannot go without me because of his physical disabilities, which are getting more and more severe. So, once again, I put AD ahead of everything. I figured a Mahjong game across the street was a good first step.
I do relate to the change in talkativeness. I am MUCH more apt to just open up and enjoy conversation when the opportunities present themselves. I was formerly more reserved. I guess having my happy marriage to fall back on left me with less need for social interaction, but I've got the need now, and I find I do like to converse!
Anyway, my personal point of emotional progress isn't really all THAT enviable. Maybe I'm just--now--less immersed in the immediacy of the pain of being a brokenhearted spouse...the ache for the relationship has dimmed. Hence it's easier to function and my state of mind's a bit better.
Still, wherever we find ourselves with that, there's not a one of us doing full-time caregiving who's not going to feel down about the limitations/restrictions this job places on our opportunities to be out and about in a way that seems "normal." There will always be an aspect of social deprivation to this job, however you feel about your current state of heartbreak.
That's why we sometimes have to kick ourselves in the tailfeathers and get out and play mahjong or similar when we can.
I am new to all of this. My husband and I have only been married for 3 years and even though I knew he had dementia, I was not aware of the extent of it. 3 weeks after we got married, he had back surgery that failed and I think it escalated his dementia. I am beginning to think of my future and ours and looking for ways to rejoin life outside my house. I don't want to isolate myself. any suggestions? Emily, my ache for relationship has not diminished but I am recognizing the need to adjust and move on. :-)
Welcome to my website. Yours is definitely a situation that we have seen here, but not too often. Most of us have had long, loving marriages. It's the memory of those years that keep us going. I think it is important for you to learn as much about Alzheimer's Disease and what to expect down the road. Once you have a good understanding of what you are facing, then I think you can decide how to rejoin the outside world. We will be here to help you every step of the way.
I started this site in 2007, because I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. It 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". If it applies to you and your spouse, there are 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.
When you feel comfortable, please tell us more about you and your spouse.
Joan: I've not yet thanked you for such a great site. Glad I've joined. Been on this journey seven years now, alone. No kids. Helpless family.
YOur blog triggered a rememberance. In the beginning of all this I thought my wife and I were headed into troubled waters. Changes in behavior, accusations, totally out of character for her. Well as luck would have it she one day banged her head rather severly. Our doctor suggested an ex-ray or MRI , I don't recall. The doctor came in and explained there was rather noticeable atrophy of the frontal lobes of her brain. He then proceeded with the classic memory test and she stood up and walked out. He advised me to speak with our DR. and thus began the slow downward spin to where we are now. I will say that once it was rather certain she had ALZ. he advised aricept and another med ( I can't recall just now). I'm convinced the early application of these two meds gave us more time. I believe it slowed the enevitable process. I tell anyone who will listen. Find out soon and slow it down.
Joan - I love playing mahjong on the computer. I first heard of it when I had to read 'Joy Luck Club' for a college class. You will have to let us know how it differs from on the computer. I think you have made a good decision. If it doesn't work out, at least you will have tried.
Joan I can so relate to what your saying. when my wife started to go downhill she couldn't nor wanted to talk about much of anything. Sleep was her ally and she spent most of her days sleeping which left me alone and very frustrated. The computer was my only outlet so I would spend a lot of time either reading or emailing people I knew. Being the lone caregiver and not having close neighbors that she would visit with left everything on me. My computer was my best friend and a way to reach the outside world. When she passed although it was very difficult it also lifted a tremendous burden off me. Since then I have went to Texas,Arizona and Arkansas to visit relatives. The whole trip was a blessing from God and He planned it perfectly right to the last detail. I rode the train and other than it being a very long journey it was a beautiful trip and I saw everyone on the list. When you feel a push to make a move from what your doing and it feels right just DO IT. I still have my moments but I still feel like I have been blessed and know that whatever happens now will be right for me to do regardless of how much time it takes to happen. Your care will not go unnoticed and you will be blessed. May God Bless you for your caring and this website. Bruce
I have been attending a water exercise class for seniors for almost 10 years. Since DH dementia has become apparent he seems to resent my going - he never did before. He can stay alone and I still try to go to the twice a week classes but sometimes life just gets in the way. I started going as my doctor said this was better for my arthritis than the two mile walks I had been doing. I don't know if he doesn't want to be alone or if this is just a phase but I enjoy the ladies at the class and the water and music are relaxing so I just ignore his grumpiness.
Joan, definitely get out and join that new group. I'm also grudginly starting to take a step out on my own for the first time (for me it's bowling). It's not easy. But do it, enjoy, and do not feel guilty!
Good for you, Joan.... and flo39, please keep going to your water exercise class while you can still leave him alone for a little while. Up until about two months ago, I still felt ok about leaving DH alone but now I don't. DD comes once a week for a few hours so I can get out but that time is mostly filled with errands. You really do get a trapped feeling.
I am still grieving for the man I never knew. I see him deteroriate every day a little bit and I see his frustrations. B. has failed back surgery and is on lots of pain killers. That makes it doubly hard for both of us because we are also dealing with morphine addiction. I am co-dependent as well and even though I just want to make everything go away for him, I know that is not healthy for either of us. I went into counseling initially to learn to be more assertive and not just shut down when he rages. Now I am changing all my perceptions and changing "assertive" to "firm". What I thought was directed to me is just the disease, so I am learning not to take things personally. I am new to this area, been here 2 years, and have no friends but work people. I am looking for a way to make friends that can support me locally. right now my supporters live out-of-state. A group meets once a month on Sundays and a list of volunteer duties are presented. I am thinking that is something that might be a good start.