I'm new here, although I've been reading your posts (on and off) for around 2 years. I'm not sure how well I will fit in, or if I will be accepted: I am male... and my spouse who has AD is also male. I hope that this will not be an issue for people.
So, for now, I just want to say "hello." Thank you for your helpful discussions. You have helped tons of people (even people who haven't signed up) by openly sharing your thoughts, stories and advice.
BLN, so very happy you found us. I agree with bluedaze. So sorry you have to be here with us, but it is absolutely the best possible place to be if you are on this long, hard road. When you feel like it, give us more information on your partner and feel free to ask any question or chime in with your advice too! Welcome.
BLN - welcome to our site. I have yet to find that anyone here is too concerned about race, gender or sexual orientation. AD does not discriminate and neither should we. Hope we can be of help to you.
BLN, Trust me, we will embrace you, cry with you and we'll laugh with you at the absurdities of this dastardly disease. As bad as it is, we have managed to throw in what we refer to as Alzheimer Humor..that more than likely, no one else would understand. If you've been reading our posts, you have obviously seen some of those, too. And we have Phranque, ...well, I'm a Southern Woman, and it's said we say it all when we say, "Bless His Heart". Where do you live?
Welcome to my website. We do not discriminate here. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife/life partner. The issues we face in dealing with a spouse/life 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.
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". 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.
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 doing so, please share your ages, time since diagnosis, and any problems you are encountering that you need help with.
Welcome to the website, but sorry you have a need for it. You will find much information and support here. Tell us more about yourself and partner. My husband has FTD and was diagnosed in Aug, 2008, at the age of 58. We are all in this together.
We are all in this Alzheimer's popcorn machine together and together we try to help one another. There is no time to worry about who is tall or short or skinny or fat, straight or gay.. In this world we all have the same "third party in this marriage" as Princess Diana once said of Camilla. Let us know how we can help.
BLN, Alzheimer's is an equal opportunity horror. Your grief and pain are as real and as valid as anyone's. Sorry you needed to find this place but you are quite welcome here.
Can't really add anything that hasn't already been said other than that you have come to an absolutely wonderful place to learn ... and to exchange ideas should you so choose ... and as has already been said so well by others, we are ALL in this together!
Welcome BLN-like the others say AD does not discriminate nor should we. hopefully we can offer a hand in friendship and lots of good advice or humor or hugs when needed. feel free to join in any posts. we dont hold back on discussions of any taboo nature as you already know. divvi
I'm adding my welcome, also. Sorry you have reason to be here, like the rest of us; but it's a great place for encouragement, a shoulder to lean on, people to commiserate with, laugh, cry, vent with, give and receive cyber hugs. ((((hug))))
I think the above comments will tell you that there is not much difference between husband/wife/life partners when it comes to Alzheimers. But you might find some small difference between the needed skills of a male garegiver vs a female caregiver. Many of these differences come in areas of hygene, diapering, and household skills. Most of our members are from the female side but they give us men very good advise on all subjects. Another difference is that most husbands are bigger and stronger than the females so some of our remarks will be based on these abilities. But, ALZHEIMER'S does not affect males much different than it does the females. Hope you gain from our friendship. bill (male caregiver)
BLN as stated above welcome. Love is love and as a caregiver you have to be full of love and compassion. Your heart tells you who that will be not us. We embrace you and yours with all the knowledge and help that any of us can offer. Of course there are many here with wells of knowledge that they pass on to us. Blessings come in all sizes, shapes and areas. So does this horrible disease we are all sharing with our loved ones. God Bless and keep coming to this site. It is a Major Blessing.
Welcome, BLN. I can't add much to what the others have said. I'm glad you've found this wonderful place. You will find lots of love, caring, and hugs here.
Hi BLN, Let me add my unfortunate welcome to all the others.
No we do not discrimate, but as everyone here can attest to, if you thought you had a non-traditional spousal relationship before, AD will make it even more bizzare.
Dementia takes away every trait that makes a spousal relationship function. When I went to my first AD support group and they described me as my wife's 'caregiver' I asked them when I ceased to be her husband?
"Caregiver" is the word coined to describe the relationship that develops between a AD parents and grandparents (accross generations) There is not yet a good word that describes the spousal relationship change that occurs with AD.
It is the exploration of AD and its affect on the spousal relationship that makes THIS PLACE so special. Sorry you have to join us.
BLN--I hope that by reading everyone's welcoming posts, you'll realize that acceptance of your situation is not an issue here. Please tell us more about you and your partner.
Adding my welcome too, BLN. Until I found this site, I thought I must be completely crazy. Lo and behold, things were happening in many of the same ways for others here. I was amazed and encouraged. Always thankful for everyone here.. Welcome.
Well, I guess you've all answered my question! Thank you very much for your warm welcome.
I'll share more about myself and my husband (we are legally married) as time goes on. But, for starters:
My husband is 64. We've been together for 25 years. He started showing mild symptoms when he was around 56. From there, his symptoms had been worsening *very* gradually, until 3 or 4 years ago, when the decline was somewhat rapid. He then plateaued for another year or two... until last spring when he experienced another rather quick decline. He is still working, but his performance is starting to suffer. He's in the type of business in which I can go to work with him and assist him in certain areas. However... I, myself, am on disability because I have epilepsy. My epilepsy affects my cognitive skills. I have all I can do to take care of myself some days, and so I'm exhausted trying to keep up with both of our needs. And I know that the worst is yet to come.
BLN--welcome to this most helpful and supportive site. So sorry you have to be here, but take comfort in the fact that we are all friends. Come here to vent, ask questions, and vent some more! I don't know your place of residence, but have you availed yourself of any services that may assist you in caring for your husband, or will you be able to when the need arises? An attorney who specializes in eldercare may be able to help also.
I don't want to overwhelm you with advice, but there are 4 very important things I think you should do right away.
1. Consult an CERTIFIED Elder Law Attorney concerning living wills, Powers of Attorney, Healthcare Powers of Attorney, will, and asset management.
2. Contact the Alzheimer's Association in your area and ask for a social worker to visit and assess your and your husband's needs.
3. Contact Elder Services in your area - go to my home page - www.thealzheimerspouse.com. Look on the left side, and scroll down to Elder Care Services. Click on that. All you have to do is put in your zip code, and a list of agencies that can help you will come up. OR call the Elder Care Dept. in your State.
4.Between the AA social worker and elder care agencies, they should be able give you a list of living options in your area. With both of you having problems, it may be a good idea to move to a facility similar to the one my husband and I live in. We are in an Independent Living Villa next door to an Assisted Living Facility. We have our own little house - a dinner meal delivered, weekly cleaning, and all indoor and outdoor maintenance taken care of. If I need extra help, I call the ALF and they arrange it. When the time comes, there is a dementia unit in the ALF that Sid can move to, and I can stay here. (With financial voodoo, I hope.)
One more thing - can you get informational assistance and/or physical assistance from an epilepsy group?
BLN, let me add my welcome to the club that no one wants to join. Alzheimer's is an equal opportunity disease. My husband is 62 and was diagnosed with AD almost two years ago. I am sure you will find this site as helpful and supportive as I do.
Welcome BLN, as you know from all the reading you have done on this site, it is a crucial part of the Caregiver's Survival. I would not have survived without this family. So let me just say, "Welcome to Our Family." Arms around, Susan
Another welcome, BLN, from another one of the few males on this site. I was going to give you some advice, but it has been covered above. So, just welcome, and feel free to ask for any help you need.
BLN ... I'm hoping you find this site as terrific as I and so many others do. I, too, suffer from 'new ideas fatigue' at times, yet this is one site I check daily. More often than not I choose not to post comments. I usually just skim or read Joan's blogs, and skim or read what others are posting on various discussion threads that seem interesting. I try to always pay attention to the new threads that always seem to pop up ... like this one! Just this skimming and reading provides much comfort on many days. So, again, welcome to what many of us think is the single best site for spouses anywhere. How Joan keeps it together ... and finds the time to post comments herself to help some of the 'newbies' or even the 'oldies' who open new discussion threads ... is just amazing to all of us. But as you noted, we just want to 'be here' because we all find some comfort here!! And Joan makes us all feel comfortable on this site!!
Dear BLN: Sorry you have to be here..but you could not find a better place to help you on this Journey...You will feel the love and the caring...A place you can open your heart, and feel at ease...Bless you Both...Rosalie
I wish I could respond to each and every one of you. But you've offered so much here, I wouldn't know where to begin! So, please know I've taken in all of your warm welcomes and comments, and I appreciate you all so much. You are an amazing group of people. I had not expected so many responses, and so quickly.
"Acvann", what you wrote is pretty much the manner in which I, too, have enjoyed this group (even before signing up). This group is largely responsible for why I do have so many things (such as legal issues) in order already. I've learned so much from just peeking in here for the past two years.
I hope that eventually, I, too, can contribute in a way that will comfort others.
The people I know, including my family, say they understand what I'm going through, but they don't, not really. Being able to come to this site when I'm having a problem, just feeling low, or even just to say "hi", has been very comforting to me. The people here are warm and welcoming to EVERYONE. I hope you'll come here often. Welcome!
Welcome BLN...it has all been said above. I have just one more thing to add. For many of us that live in small isolated areas....this is ALL we have in way of support groups, and we could not ask for better!!! Thanks again Joan!
Welcome indeed, BLN. As you know we're all on this crappy journey together, and this site is terrific, whether you post alot (I don't) or read alot (I do). Glad you found us!