At diagnosis, we learned that our LO's have 8 to 20 yrs left to live, there is no hope for a remission or cure, they will gradually get worse and worse and in the end, become completely dependent on others for all their care. Sooner or later, we come to terms with that. My question is, how do we deal with a situation that we didn't cause, have no control over, that causes enormous sadness and hardship in our lives? Although I want my husband to live as long as possible, at the same time, I wonder how I'll survive so many years of sadness.
I feel the same as you, it is so hard, but I just pray each day that I can make it through, and take it one day at a time. To watch someone you love slowly deteriorate, is one of the most devastating things we can imagine. I can't think about the next years, next week or even tomorrow, because I just don't know. I have had to find some diversions...sewing, painting,reading, anything to take your mind off the things that make you sad. I also started depression meds, and that helped some. But nothing will ever take the sadness completely away because there is no cure, no hope for them to get better at this point. We just have to find a way to cope. I know this isn't much help, but I have found that finding others that are going through the same thing is so comforting. My heart goes out to you. Linda
That survey asked about hope for a cure, but there is none in their lifetime. (I guess miracles can happen) This is one of the view instances where there is no hope - it has a hopeless future.
The hope is for us - that we will survive and be able to carry on in life that sees sunshine and happiness. Just hope I can see there is light at the end of the tunnel cause right now I do not see it. Maybe cause we are just at the beginning of the tunnel the end seems so far away.
You ladies express yourselves so well and often put my thoughts into words so no need for me to do it. However, just a comment on what you are discussing on this thread: I think the same thoughts and fight the same fears (except, as most of you know, my wife has matasticized non-hodgkins lymphona) but, and hear is the possible problem: It seems to everyone that knows me that I am handling things very well when right under the surface, I am seething with anger, resentment, disappointment and a few other bad things. I have developed the ability to suppress these and I sometimes wonder , if that is a good thing and how long I can continue this facade. I don't think this is good for me and I know it isn't a good way to live, but, I have to admit that I have become very good at it.
dean I don't know about you-but my fear is that once I lose my "brave" facade my world will come tumbling down. We do what we have to do and that's it.
From past experience: sooner or later the bubble will burst. That is why it is advisable to cry, vent here, in a journal or some other way along the journey. A deep, deep depression is no fun.
One day at a time. Who knows what may happen to us and who can control it. Deal with it as it comes and worry about the future later. I have found the anti depressant to be a real help. Some of the things that used to drive me nuts ( repeating herself) do not seem to matter now.
Dean, it's a defense mechanism. Self preservation. Even here, I can't let out all that I feel. I can't allow myself to fully feel them, say nothing about express them. I can't let these feeling too close to the surface. I fear I would completely break. I can only hope, I am able keep up the front until after his journey is over. ((Hugs of understanding))
It is like when I crashed into depression and went to counseling. I would only let go when with the counselor where I felt safe - there was someone there to keep me from dying from the pain. Otherwise, I felt if I allowed myself to feel the pain while alone, I would die from it. That is one main reason people will 'cut' - it is a methods where psychologically pain is let out with the blood. My counselor was of the thinking of many that it was pre-suicide attempts -practicing. But it is in no way suicidal actions, but it does become an addiction as strong as alcohol or drugs.
Yeah, I try to take one day at a time, too; but lately I've noticed they keep piling up faster and ganging up on me.
Actually, my kids and his have been after me to "place" DH in a nice AZ care facility in Spokane. I finally told them that short of a major disaster it was not going to happen till at least 3/1/10. I said that at that time I would be willing to "revisit" the issue. That helped them to back off, but surprisingly it has also given me some comfort to know that I have that option and a date to go with it. Makes it feel that there is a light at the end of the tunnel. Not that I actually know that I will place him at that time, but just knowing I have given myself permission to look at as a real possibility has made all the difference in my attitude. I also know it will be very traumatic when it does happen and that has helped me be more loving and gentle with him.
Hope for a cure? Sure miracles can happen, but realistically, until more is known about the cause of AD, a cure is pretty unlikely. Don't know if it's been discussed on these boards, but scientists aren't even sure whether the placques are a bad thing or a good thing in the brain. So most of the meds, approved and in trials, are based on the assumption that the placques should be removed. However, that may be totally wrong.
Dean--I agree with Charlotte that you have to let out the sadness is some way. I cry, and talk to several close relatives about what is going on, and of course, come here. I know guys generally have a harder time expressing emotions, but I think it's important to have some way of doing it. Maybe to a therapist?
gmaewok--I think you were smart to set a date--better than giving your kids a flat "no" when they'd probably keep bugging you--it was a compromise.
Here's another idea--has anyone tried grief counseling BEFORE their LO passed away? I don't really mean an AD support group--I mean a group meant for those whose LO's are gone. Since we've lost our LO as they were, perhaps it would help? (Don't know if this type of group would even accept us--but it was suggested to a friend after she placed her husband in a care facility.)
St. John's Wort and meaningful (to me anyway) writing projects that I am able to pursue while remaining available and mostly home. In my case, lots of crazy teen thru college-age children running in and out and being too busy to wallow much. A little acupuncture to help restore equanimity. Pets. Recognition that life-in-general just sucks a lot of the time for a lot of people, so I'd better just appreciate the good stuff.
emily--please elaborate on the acupuncture. I've considered trying it--does it take a long time to start working? Also, I'm not good with physical pain--I tried it once--didn't hurt except in one place on the hands--she had to take them out.
How am I dealing? 1. I pray for strength constantly 2. I just keep putting one foot in front of the other 3. I stay in close communication with this awesome group 4. I talk about my fears 5. I no longer try to hide my tears 6. I go to couseling once or twice a week 7. I believe in better living through pharmacology 8. I accept and ASK for help 9. I Believe God will somehow lead me through this 10. I take time for me, even if it's just 5 minutes at a time.
Yesterday we were at a gathering of good, kind, old friends and sat around all afternoon over drinks, snacks and later a barbecue. Talking about many things. And all I could think of, much of the time, was that, with DH beside me except for a little walk he took with one of the guys (to check and see if my car was still OK on the parking lot!) I couldn't talk about what was most occupying me day and night: the ongoing AD ride and the safe haven I have found here.
Deanl, I agree that the facade wears me down too. I wonder which is harder, protecting them in the beginning so that the dementia won't be obvious to other people or keeping up the facade with the LO after others have been told. In an effort to not have other people start to avoid me I've started answering questions with, "Some days are harder than others," said with a pleasant slight smile. I find that at the end of the day I'm so exhausted from all my efforts to avoid reasoning, explaining, arguing with him. He's gone downhill so much in the past six months that I now accept that any really meaningful conversation is not going to happen. So I try to keep him happy and calm as possible. Yes, this facade is more difficult. Adn so the charade goes on. The antidepressant I take helps some.
I was glad to see this topic. We have been dealing with john's memory problems for almost 5 years now. But still, until fairly recently, it has been manageable. It is getting more difficult. And I wonder, did you all go through a kind of transition stage where you just weren't interested in much of anything else? I feel myself pulling away from people and activities. I wonder how people go on interacting with a society when their lives are so focused on these illnesses. Even with John [and my bi-polar 23 yr old] I have stopped asking questions that won't be answered except by "I don't remember", a "confabulation" or some in your face attitude [daughter]. To most of my friends John seems pretty normal and they don't really understand and I'm not really interested in getting them to anymore. He retires from ministry in 3 weeks. A very stressful time for him but I am ready for a time when I won't have to be sociable or be asked "how is John" from people who love him but don't get it. Is there any way to have a life outside of this disease? [John is MCI but in my opinion has been declining]. Should I feel guilty if I don't think there is?
chrisS, I find myself in a similar position and have been so busy concentrating on his problems that I have a hard time thinking about anything else. With fall coming I'm going to get involved again in activites I used to enjoy and just force myself to start this gradual breaking-away process. This disease has turned me into a person who's not very interested in having fun anymore. It's not fair to myself to just give in to it, so I'll try my best.
Yes, the facade! It lives here with me. Every time I am with friends and family. I have learned to filter information about my dh and my true feelings because they cause all kinds of consternation with our children. Bless their little hearts! They want to help so bad. But it winds up causing disruption and sadness. I find that I cannot tell them what really has happened in our marriage. They would be hurt and it would color their love for their father. I will not do that to them. So.....I hold the truth close for on one else. It hurts very badly sometimes..M
The facade. We are all masters but hopefully give ourselfs permission to cry and go to a secluded spot and just scream. I go to the beach and watch the water when I'm having a hard day. It is calming. Wish I had a matchbox size house on the beach. It would be nice to see this every morning and night.
Me, too Kathryn.....I love watching the waves roll in, the sun going down over the water, and I even like the stormy gray days. I am 6 hours away from the beach now and wonder if there will be a time that I can go back.
M - How old are your kids? Ours are 29, 27, 26 and 23. Some of my friends get on me because I haven't ask them to help more. Three of them have been dealing with our youngest, with bi-polar- for almost their whole lives. I hate to put more stress on them until it is necessary...although too often I find myself "running over" onto my oldest. Besides my youngest she is the only one living near right now.
I have seen a few and heard of many caregivers who hold the reins in for so very long during the stressful years that when its all over they come unglued literally physically and mentally themselves. its not a healthy situation to keep pentup feelings under the surface. thats why so many of us try to diffuse and erupt like volcanoes occasionally and release toxic buildup. purging or crying is also another release. without using the essentials mothernature gave us for de- toxifying and de- stressing i doubt our own bodies will be able to endure the long term testing. and it can go on for many years so find an outlet-anyway that gives you some comfort- even for bits and peices at a time and in small spurts. divvi
I try to pray and/or affirm every day. I try to remember there are things to be grateful for.
I went into therapy for a while, and think I probably should do it again. I come here for support and to my other forums and groups for things that don't have anything to do with dementia.
I've been offered drugs for me by both my doctor and my husband's doctor (same practice so his doctor can see my chart). I know I only have to ask and I will if I need to.
I have chose to survive this disease. So I am trying to take care of me too.
divvi - you clarified what I have felt regarding the difference between my sister and me. The 3 years she cared for her husband, she did it all alone. She would not seek out a support system (except me and hb) - said she didn't want to sit around people complaining about their situation or something like that. When her hb died, she crashed and spent the next year plus in bed sleeping. Got mad at me for trying to get her up occasionally to eat something more than protein bars. I do not want to waste a year or more when this is over sleeping it away.
ChrisS: You wrote: "did you all go through a kind of transition stage where you just weren't interested in much of anything else? I feel myself pulling away from people and activities." YES, definitely. That is where I've been for the past couple years. I've always been Extrovert in the Extreme. My old friends wonder when I'll get back to being "me" but I don't know that I'll ever be that person again. But I would like to have the desire to participate in life more than I do now.
I agree that we do put on a facade, it's almost like we have to. I hate it but no one that is not dealing with this wants to hear about our woes for the most part. Yes, I can say a little bit but I look at their faces and it tells me that I have said to much and they wish that I would either change the subject or quit talking all together.
This is the only place that we can go where we can tear the facade down and let it all hang out. As far as how I deal with it...one of the things I do is remember some of the others that are going through it worse than I am and I tell myself even if they are having a hard time dealing with it, they are dealing with it and that is what matters the most.
But the best advice I have ever gotten is to take one day at a time. Put one foot in front of the other and just do it. Like has been said before, if you think of the big picture it is instantly depressing. You want to avoid that as much as possible. It is still going to happen from time to time but that's when you come here and we all try to help each other the best we can.
Just in case you think I am handling this well because I give advice I am not. I am just listening to what others say and what I am saying to you now. I am sometimes a huge basket case.
Is Joan still the only one who has found new friends through an AD support group? This is why I go to the meetings -- hoping I'll find a "co-sufferer" nearby that I can relate to. It hasn't happened yet, I do talk to people there. But here that whole system shuts down over the summer months. Nothing happening until September again. Even the meals for senior citizens come to a halt during July and August.
I dropped the FACADE. It was just making me feel worse. Now like it or not I am honest with EVERYONE. If they don't like it, tough. I do what is good for my mental state now. That my dear friends makes me feel better.
Jeanette--Joan can weigh in on this, but for whatever the reason (probably demographics), it seems to me that Florida has better support systems in place for families dealing with dementia. I base this on what she's said about her support group and the community where she and Sid are moving--nothing like that is available in my state. I've attended 6 different support groups, and only found one or two friends whose situations are vaguely like mine. One is ten years older, husband already in residental care setting, the other is at least 10 years younger, still has children in the home. I have really learned much from attending and would certainly recommend doing so, but I think finding friends may be a happy exception to the rule.
I agree that Florida has better support systems. A lot of them are self created and supported. I sought out new friends and was up front about my husband's disease. When asked how he is I give an honest answer. I don't beleaguer the issue as most folks in my community are dealing with something bad. We don't mind asking for or giving help. I hope Joan finds her community as supportive as mine.
Bluedaze, another thing re Florida. I know two women whose husbands attended the same daycare as my DH here in MD. They both have winter homes in Florida and enrolled their husbands in daycares down there. They told me there was a tremendous difference, that they guys couldn't wait to go to the centers in Florida, they enjoyed themselves so much there.
My support system is this board. Do any of you feeling afraid to let go? Heck, I haven't even been able to mourn my mother's rather sudden death in Feb 2008. I was too worried how my husband would react. The "cursed" thread seems to apply to me as well. I guess we learn how to turn to stone? I don't know, but I'm not sure that anyone will want to be around when I do crash.---I know that this disease is ruining my own health, both physical and mental, but I sure can put on a good show. Too bad we were paid as actors, too.
Ann--Within 6 mos. of my Mom's death, I knew there was something seriously wrong with my husband. I agree that it was hard to be able to mourn when your life is taken over by all-emcompassing concern for your spouse. My Dad is 95, I know he won't be with us much longer. I feel sad that when he passes, I won't even have even a short time, like the 6 mos. to mourn that I had for my Mom.
ChrisS, my children are 39 and 40. Our daugher is dealing with a 5 year old with 22Q cromazome deletion syndrome. Our son is dealing with a wife with Transverse Myalitis, pre-MS. I ask little of them. Sometimes they see that Mom's upset and hurting and try to step in to save me. It seems to cause more problems because they think I am missing something. Such as in home nursing care. I am caring for DH myself with 3 days a week home helpers for approximately 4 hrs each day. Had to take DH out of Adult Day Care as it was too much for him. They really don't get the fact that I am emotionally worn out and I think it is almost time to place DH.
Maybe they'll catch on that if you place him, you'll have more time to spend helping them! ;-)
They sound like they have their plates full, especially your daughter. It's no surprise to me that they don't understand what's happening at their parents' home. Or are not willing to face it.
Ann - you need to find an outlet of some kind. Like many here, this board is my support system. I really need to go back to what I did during my deep depression and when my mom died - journal.
I have tried to share new symptoms that hb shows with my sister whom we park our RV at her home, and she finds an alternative reason for his actions other than AD. She is no support cause she minimizes everything. She never sought support during her hb's illness and wore herself out emotionally and physically. She would not let us help much with him so we did the house and yard upkeep.
Marilyn...not yet finished reading all previous comments, but need to "get out there". Irene (my wife) LVN, diagnosed 8 yrs ago, in nursing home 5 yrs. Married 1947, Battle Creek MI. 62 yrs together, and I find myself almost in a state of detachment, trying to deal with the reality of the situation. God bless the care givers for their care. Angels they are. Where would I be without MediCal ? With emotions so near the surface, it is hard not to feel guilty for visiting only briefly twice weekly, very painful. Time is meaningless to her.
Welcome, ej, you have come to a good place, as you seem to have discovered already. You don't have to feel guilty here, there is great understanding for everyone's individual way of dealing with the tragedy that has hit us. Tell us more about Irene and yourself and your life together.
Coping is never easy. My support system is this group, friends and the people I work with. I take each day one at a time. Get as much exercise as I can - got two loving dogs to encourage that one. Every now and then, I allow myself a good cry. Lastly, I try to celebrate the little things that he can still do and appreciate that as far gone as he is, the mind is still working and going. It is never really easy and some days I fail but I keep trying.
Marilyn-- I get acupuncture once a month or so with a focus on emotional health and not internalizing stress. I would say, honestly, that it's nothing dramatic but just taking the time to have a little treatment for myself seems to be a beneficial thing for me. This would not take the place of an antidepressant for someone who was really beginning to get down from the emotional drain of caregiving.
EJ i welcomed you on another thread you posted first - but welcome again!
you may be in first place here for the longest married caregiver- Dr Marsh i believe is around the 60+yrs as well. my thats a liftetime of living with the same partner! i am sorry you find the need to be here among us but glad you found joans spouses only website. its a mountain of wealth and knowledge and those of us in the trenches offer shoulders to cry on and arms to embrace when you need a hug. hope to see you posting again. divvi
Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse 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 check out the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There is a great new section on informative videos. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
We have members with spouses in all stages of the disease, including situations like yours, in which the AD spouse is in a nursing facility. I do believe you will find the support and information you are looking for here at The Alzheimer Spouse.
Welcome EJ, I am so sorry for your need to join us, however, I am glad you found some new friends that understand what you are going through. Please feel free to post at any time.
Another welcome to you EJ. You have found a wonderful place to ask questions,vent,rant - whatever it is you need. We will all be here for you. Look forward to hearing more from you.