Hello, I have been regular visitor (silent) to this site for more than two years now. Since my wife was first diagnosed. It took a trip to a neurologist with the MRI images in our hand for me to finally realize that I was in denial concerning my wife's disease. My daughter had been noticing the symptoms by her regular phone calls from 700 miles away. My daughter sent me a copy of the book "the 36 Hour Day" which I have not been able to read all the way thru because I still break down. I do still use it as a reference manual which I find helpful still. The result was we packed up our belongings, put the house up for sale and moved the 700 miles to be closerto our daughter.
Your site has proved quite helpful to me in trying to find out where she is in this awful journey, especially "Joan's Blog" and the comments from members who are walking this journey. This has proved more helpful than doctor's visits in trying to determine where she is. I have searched for ways to educate myself so the next 'steps' won't catch me by surprise. One of my more helpful moves has been to use the resources of the local Alzheimer's Association. I can't find enough praises for those people. They are genuinely caring, not like the "plastic smile" Joan mention of one experience with lawmakers. I even followed thru on their invitation to attend a local support group meeting which brings me to what prompted me to write.
I found this meeting encouraging and even helpful, tho a bit puzzled why I was the only man in the room. Then the group coordinator started to get those present talking. I tried to avoid this until yes, no, and grunts would not do. I broke down and cried as I often do when reading your blog and the comments of some of your members. I'm doing it now. Does this ever become routine? What do I need to do to remain in control of myself? I'm ok and able to cope as long as I don't talk about it. Any suggestions?
Hello vieu Corbeau, I can tell you I also have trouble with this issue of becoming emotional. I can talk non-stop about my husbands problems and be his advocate to the doctors and care providers. When someone asks me about myself or how I'm dealing with things, the water works open to flood stage. Perhaps as you continue to go to the support group and can be helpful to others, as you aren't the newbie anymore, it will become easier.
Do you suppose there aren't as many men in your position willing to accept or even seek out help? Just a question, I don't know. There are a lot of exceptional men on this site who can give you their thoughts on this matter.
I don't believe anything in the world of AD ever becomes routine unless constant upheaval is routine. We learn ways of coping and sometimes we lose control and rant, rage, cry, vent, cuss, and lean on each other for support. It's okay, it's how we roll. Sorry for your need to come to this group but glad you found it.
I don't think there's anything wrong with crying. Most of us have a lot to cry about! I have not found any support groups I could attend - the ones near here are in the daytime, and I work. I know I would get very emotional if I did attend one.
vieu Corbeau--Welcome to the best place you could land. There'll be many more along to welcome you. As I'm sure you know from reading, we cover everything and anything you could want to ask. Knotted ropes and Hugs abound whenever they're needed. It sounds , from your post that your DW (Dear Wife) is still in an earlier stage of the Disease.
You expressed concern about the crying you're doing. It is actually a good thing. The Dementia are wicked diseases doing their best to take both of you down. Some people cry, some hold their paininand get ulcers or other illnesssesinstead. Some get angry and tackle a punching bag, throw dishes at trees, or beat up an old trash can. Getting yor hurt and anger out is good. When you're done, you'll be able to resume Caregiving,ss str3essd for a while. We do havequite afew male Caregivers here, who will,I'm surebe along. They don't post as often, but appreciate the support and help provide another perspeective. Be sure to check out the section on the left of the Home Page on tips for male Caregivers.
Hi Vieu Corbeau and welcome. I'm a big crier--always have been and I guess, always will be. I think crying is a good way to let out all the sadness, and I think it's one reason I haven't had to take any psych drugs in dealing with my husband's illness. Regarding men and crying--I've conducted a support group for a few years now--about half male and half female. A couple of the husbands have cried, and I think it's very endearing--it shows that they feel the pain of their wives' illness very deeply. Don't be embarassed, I think others would find it a positive, especially from a man.
Welcome vieu Corbeau to your virtual support group. This is where you can come 24/7 to talk, rant, & even cry & there will be someone to even give you their virtual shoulder to cry on. Today I have been crying on & off. So I understand completely about crying. Please come back often.
As one of the men in this group I can appreciate your problem. Men are not supposed to cry, but we need to just as much as the women. This is probably one reason there are more women on this site as well as in support groups. Women are much more able to express their feelings. Men feel they have to solve problems, but with this disease that can be almost impossible.
Tell us more about yourself. My wife is in stage six, age 81. I am 80. We live in Maine.
Welcome vieu Corbeau. This is a good place to visit regularly if you are a caregiver. I (66) have been looking after DW (62) for 5 years now. It' s a humbling experience and I've found it's not realistic to expect to be in control at all times. Guys are conditioned to stay in control and hold it all in, right? This approach hasn't worked too well for me. Crying doesn't come naturally to me but on a few occasions crying came and I welcomed it. It's hard to explain just how but it was very comforting. It felt very normal , very natural to cry. I felt stronger afterwards. Early on in the course of DW's dementia I was not able to cry even though I felt the pain deeply. I think that those who can just let it flow are the fortunate ones and are better off for it. There, once past that emotional hurdle, there's nothing one can't talk about here.
And why not? Welcome Old Crow. I share the trait of being ok talking about my husband...but do not ask me how I'm doing or show too much tenderness because that will puncture my tough shell.
I do believe that caregiving comes easier for women then men. We were the ones that probably did more towards caring for the children in the family especially when they were young. But, of course this caregiving is so much worse and little joy like there were with the children.
It is one day at a time if one is to cope with this. You will learn to try and treat your wife as much as you can like she is normal. What I mean is when the speech goes, the forgetting where anything is, the not being able to feed herself...will probably come one day at a time, one week at a time ...you never know when but, take comfort in what she still can do...keep looking for that little part that is still there and make the best of all these little parts. We are here for you and there will be no question you ask that can't be answered because between all of us here, someone has had that experince.
Personally, I find lots of information on the Fisher Foundation site.
Vieu: Welcome. My wife stage 6. My advice: don't hope for meanful understanding from anyone, esp family, don't wonder why some people don't get it, don't have any expectations, try to be kind to your wife at all times ( its not her fault) live for the minute, hour & day only. Get excercise to relieve stress, know it only gets worse, don't dwell on how you feel rather redirect yourself to chores, let yourself experience the sadness every time so that one day you can be more accepting. Find some small pleasure or hobby that you can pursure and look forward to. Seek proffessional help i.e. Don't dwell on negative thoughts; cast them aside, try to have fun with her if you can, try humor even if it for you only. Don't think to much, just do what has to be done. This is my advice after 7 years of this and counting, no God, no help from anyone-ever.
soolow--all good advice--especially the humor. My husband is late stage 6, always had a great sense of humor and joked around a lot (I was the more serious one). Now I try to joke with him as much as possible; even though he can't speak intelligently anymore, he still tries to tell me jokes--I can tell by the delivery, not the actual words he says. I pretend to laugh uproariously and tell him he's so funny. Sure better than last year when he was angry all the time and walking around the house upset by his reflection and muttering to himself!
I have already traveled the road your on and I will tell you part of the journey. My DW passed last September of AZ. She had no other life threatening health issues. She was diagnosed in 2005 and at first the decline was slow but in 2010 the slide started to speed up. When the diagnosis was first confirmed our primary told us that it was uncurable and he could only try to slow it down with medicines that were available. They did (maybe who knows) slow it down but the end result was final. That trip is the most difficult journey you will ever make in your life. Do not be afraid of being human and having human feelings. They are after all put in you by our GOD and HE is the master creator. The crying is all a part of dealing with the changes that are occurring in both you and your spouse. For now, you in order to survive this journey must give yourself to GOD to be taken care of by HIM while you take care of your spouse. I threw in the towel and she became my only concern. Everything that helped her regardless of what or how was done for her comfort. My needs did not matter any more and I found peace in the arms of the LORD. I cared for her alone until she passed. Hospice was here only for a few days at the very end and the care they provide was mostly supplies that we needed for her end care. She passed at night with only me by her side. Now my faith is the one thing on this earth that provides me a life. Yes I have five children and sixteen grandchildren, but my comfort comes from my faith in our LORD. I always believed that God existed but now I KNOW HE exists because I would not be writing this message to you and all the others here at AZ spouse if HE did not. After I lost my spouse the grief was overbearing and suicide was definitely an option but MY faith and the message that GOD gave me was I love you and so does your children and losing you as well as losing your wife would be devastating to them and to ME so just believe, trust and find comfort in GOD. Joan may edit this message but I pray to GOD that she allows other here to read it before she does. The LORD is my comfort and salvation and in HIM and through HIS love for my I am now on a forward journey only months after her passing. I still have my moments of crying and loneliness but thanks be to GOD I am also going out meeting many new people and even dating and dancing and eating out with friends. That can and should be everyone's forward journey.
Bruce, thanks for that uplifting post. I know that I could not do what I do without God. Welcome to you Vieu Corbeau, I hope you find encouragement here.
Dear Soolow. Your entry, reflecting 7 or more years of caretaking experience, offers some poignant and useful advice . I believe a lot of us can identify with your observations. I find a lot of what you say practical and helpful. I am saddened though by your statement of "no help from anyone-ever". Be reassured ,at least in some small way, that your writing this is YOU helping some of us.
vieu Corbeau ... for more than a year I was the only man in my weekly support group; now I'm one of 2. I agree with others who wrote that it may be a 'macho thing' as to why there are usually so many more women than men in support groups. I know that I, myself, resisted going ... it was my wife who insisted that I go and I've now been going to my weekly group for nearly 3 years. There is more wisdom in my support group ... and in Joan's blogs and many of the comments that follow ...than in the medical profession. We caregivers have 'been there/done that' and as is true in so many other areas of life, unless you sit where we sit, it's impossible to know what we must deal with. I'm glad you found your local Alz. Assn. helpful; it was not helpful to me, but the local branch of the Alz. Foundation was very helpful and its their support group I attend. Some of us wear our emotions right at the surface, some not. I cry easily and am neither ashamed nor embarassed ... nor should you be upset that you cry easily. My wife was diagnosed 3 years ago, but I had seen AD symptoms for 2 years before that ... unfortunately, because she never exhibited those symptoms in the doctors' offices and she scored very well on initial testing, doctors treated her for stesss, anxiety, and depression when she should have already been diagnosed with and treated for Alzheimer's. For me, nothing is ever 'routine' about AD except that, over time, I have come to accept more and more that there is absolutely nothing I nor any doctor can do to change what is going to happen so I've possibly 'toughened up' a bit as my wife has continued to decline. Declines and new symptoms that used to cause a lot of tears still cause tears ... but not as often. Maybe I'm getting numb, maybe I'm getting more accepting, maybe I'm getting more realistic. I don't know. Sometimes I still find myself bursting into tears ... but not as often. One of my most common expressions now is ... it is what it is. And when my wife suffers yet another new decline, I simply call that "our new normal." Good luck with your personal journey. At least you have found this site, the single best site there is for all of us struggling to keep our heads above water. Joan, somehow, keeps hitting the bulls-eye with each and every blog and she definitely helps to keep us all sane!
This place has been like a life preserver to someone (me) floundering, unable to swim. The Alz. Assoc support meetings here were attended by adult children who were caring for their parents. Some of the issues were the same BUT I never felt quite understood because my husband was 65 at the time. He was healthy, but things were very wrong. I don't even know if the Alz.Assoc understood how to support spouses at that time. That was 8years ago. That you can cry is good. I know that you will find support and encouragement here.
Welcome to my website. From your post, I see that you are already familiar with all that we have to offer. One of the advantages of an online support group is that if you feel uncomfortable crying in front of others, you can cry all you want in front of the computer without feeling uncomfortable.
A word about men and emotions - I attended a face to face support group for 4 years. It helped me get through the beginning and the worst rough patches. I no longer attend, but that's a subject for a different thread. What I feel is relevant to your post is that the men in the group talked about "actions". They wanted solutions to problems such as showering their wives, keeping them from wandering, dressing them while they were resisting, finding items their wives were hiding. One time, one of the men was visibly exhausted - falling asleep in group - because he was up all night with his wife's issues. I asked him point blank how he FELT, and he could not answer me. Or would not answer me. He brought the subject back to "actions" - how he could solve this or that problem related to his wife. No amount of prodding EVER got him to talk about his emotions, and even after he placed his wife in a facility, I never saw him cry. Personally, I don't think that's healthy.
Another man in our group was caring for his mother, father, and age 50ish wife - ALL had Alzheimer's Disease. That man cried a lot, and I think it did him a world of good to do so. He talked about how he felt, and how overwhelmed he was, and now, 2 years later, he and his wife are active advocates. He is doing far better than I could ever be in his circumstances. Was it the ability to cry and discuss his emotions that helped him through? I don't know, but it's my belief (my own opinion) that letting out the emotions is far better than bottling them up.
Another welcome, vieu corbeau. I've been at Joan's place for over 4 years and have gotten soooooo much information and help from our caring family here. My DH is in early stage 6. Yes, I cry too, although not as much as a couple of years ago. Like some of the others, I cry more when someone asks how I'm doing. At DH's last doctor visit, I answered all the questions about DH like a pro but when the doctor asked how I was coping, I started to cry.
Welcome vieu Corbeau, I have been here about a year. My dh has had cognitive problems for at least three years and looking back probably more like 8 years. Even though in the back of my head I was aware of his problems, when he was actually diagnosed by a neuro last March I still cried for months off and on. Denial is a strong thing. Soolow you have some very good tips. Even though I have friends and family it is still a lonely journey that no one comprehends ... so I come here.