I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I am trying to do the best I can. What about you? Pleae post comments and opinions here.
At 62 you say you may have 20 years left. At 82 I am hoping I have 20 years left that is if I can keep my brain healthy. Right now I feel like I am stuck in traffic that shows no sign of moving.
Naw, I get it. Here I am with an Alzheimer spouse, being a full-time caregiver, and sometimes I feel guilty because of stuff like...I'm not working FT and raising small children like my sister, or trying to squeeze in a bit of rest from working all day like lots of my contemporaries.
I'm missing a lot, and I'm aware of what I'm missing, and lonely. A lot. But, otoh, I have what--at the moment--is a manageable and not entirely unpleasant existence which comes from doing what I have to do with the dealt hand.
emily, I'm in the same frame of mind as you. It's "manageable and not entirely unpleasant existence". Not what I envisioned at this stage of my life, but I can deal with it now.
Joan - you expressed yourself so well. Everything you said and feel is everything I am experiencing. Inspite of all the negatives attached to AD, you have made the most of your present life. Lord knows you're a blessing to mine.
Whoever took you to task should be ashamed. When I retire in February I hope I can be as positive as you.
Put that person's comments behind you and continue doing the good job you are doing on a daily basis. Thank you for this website.
Joan, thank you so much for this blog. It has been and continues to be a long journey of my trying to be positive about this situation that I have found myself in and don't want to be in. I just know that being positive is better than being negative. Although I still go through both at least I know how to have the positive as well as the negative. You know what I mean or am I rambling? I also see other couples and wish that I had that kind of relationship too but I can't allow myself to stay in that frame of mind. I also know that I am not done with crying because I have been crying for the last few hours because my DH is having more physical issues now. It is really hard to see him not be able to walk or take a shower like he could just a few months ago. It's like just about the time I think that I can handle what is going on something else happens and I have to adjust again.
Joan, Everything you wrote is so relavant to how I feel. Obviously, the person who took you to task has never walked in your shoes & if they have well then they must be wallowing in their misery. I don't mean to get religious on you, but if I didn't have my faith I don't know if I could cope. Also, I am very blessed that I have 2 daughters close by who help me. You are also a blessing for giving us an outlet for our emotions. For those of us who don't have a local support group or can't get to one this website IS our support group. MANY MANY THANKS!
I too have been taken to task for being too Pollyana-ish about all the things that keep happening---putting a positive spin on it all. To a great extent they're partially right, but the ones who've done it don't get the reasoning behind it. I have to say also, they sidestep or ignore the negatives I just deal with the way they are. As far as I'm concerned it's a matter of survival. When you start the race of life behind the starting gate you're behind before the first turn. Why not take the time to look around and see what lies ahead? Prepare for how you'll tackle that hill down yonder? You make choices that fit what you know to be true in hopes the outcome will help you build a good, productive life. Why would I want to waste time bemoaning that which I will never be able to achieve? I'm better having become what and who I am and being able to be good at that, most of the time. When binding my life to my DH I looked at the strengths we each brought to the marriage, acknowleding the weaknesses and marveling at how well we blended into a partnership. We were so much stronger together and had a much fuller life together than we ever had apart. So many saw only the weaknesses and claimed they'd weaken us further and divide us eventually. As we've grown older we've been hit with a couple staggering blows. They have brought me to my knees, and worse. our partnership has been nearly destroyed and I had to go back and resurrect the earliest lessons I learned. I am in command of us/me and will direct what becomes of us. Everything will be handled---in its turn. Until then each thing will reside in its compartment in my filing sytem. I will face reality, accept it, and then make each day of it the best that I can. Some days will be way better than others. That's okay. I will look for the positive side to everything, but if there isn't one, I'll look at the least negative side. With Vascular Dementia stealing my DH away, I have accepted that we won't have years and years. Some accuse me of being negative because I accept it. They're nuts. It doesn't mean I've given up, but rather I've changed my focus. I will see that he has the best life I can provide him for as long as he is here. And after he has left me, I will go on. I'm beginning plans for that. Is there bad stuff going on here. Definitely. There will be more too. I'll deal. BUT I'm NOT wasting my time moaning and groaning over all of that, crying in my beer (waste of good beer). That wastes my time and I don't have it to spare. I do admit to down times, and even "poor me" times, when crap happens and I'm tired and don't feel well. That's natural and I accept that too--for a short while. But that won't solve problems, fix anything, or make anything good happen. That's when I look for the tiny things that can make a day so nice--sunshine, cold milk, hot coffee,the kitten's antics. and I pull myself together and get back into the pilot's seat. We still have a lot of living to do.
I agree with emily and vickie. Not every day is a bad one..there are more good than bad actually. It is those things that you mention, Joan, that we know we are missing that we see others enjoying, that make life more lonely for us along with the loss of freedom to come and go as before. That person that gave you a What For, Joan, should put a sock in it...that person has no idea what they said and how uncaring it was. Just wait..they will get something some time in their life and they will remember what they said and will blush with how foolish it was.
Just checking in here and have to repeat yet again, how completely THANKFUL I am for this site. I appreciate everyone who shares, or whines or advises or blows off steam. No one can grasp the enormity of this MONSTER unless they live with it.
Come on people, We are the ones who are living this nightmare. Anything we can do to keep our spirits up. What do they expect, Joan, for you to cry all the time. yes, we've all done our share of crying. People will say to me, how can you laugh, what's funny about that. Well, if you don't laugh you cry. what's the point of crying. We're here in this situation, and we have to make the best of it. Like MImi said, everyday is bad. just some are less bad. One of the days Dick goes to day care, I get together with my quilting friends, who I had crossed off the list because I was so devoted to taking care of him. Well, I need outlets, and so yesterday was less bad.... even bordering on a good day. People who criticize us should walk in our shoes for a few days.
I don't even know what to say. How should we act? Should we curl up in our beds and just cry the rest of our lives. How do other people deal with their hardships, death by cancer, loss of a child, early death of a spouse do to a car accident. (I have family and friends who have gone through these.) If we all just stopped living because we should never again be happy, what kind of world would this be. I can still be happy, find joy. I am not alone, I have family. What kind of mother would I be to my children if I let this eat me up to the point I could not be there for my kids. I still need to be there for my DH too. What kind of wife would I be to let him see me crying all the time. What kind of life would that make for him.
Just one more thing. It is OK to be happy some of the time. It is OK if you find yourself laughing at something. It is OK if you feel joy once in a while.
And like carosi I have accepted that this is a terminal disease and that he is dying. My job now is to make sure that he is taken care of, that he is comfortable, that he is not in pain and that when he dies, it is as easy for him as possible. It is too late for anything else.
I've just read Joan's blog. It sounds like she has reached the point I was at when I started reading the HAPPY FOR NO REASON books. There are several of them including one good one with that very name. But they all teach one thing. You can CHOOSE to be happy. That doesn't mean you don't recognize that there are bad things out there. or happening to you. It means that if a moment of joy appears, you allow yourself to choose joy. It means that if you find yourself screaming or crying yet again, you ask yourself it it is a real emotion you are feeling or just what you think you are supposed to be doing. It means that you allow happiness and joy to happen when they happen, and enjoy being happy instead of feeling guilty about it. It is OK to grieve or feel sad if that is truly what you are feeling. It is also OK to put them aside and start living again if you can.
Years ago I told someone something I had learned from my truly ugly childhood situation. I said, "No one can be miserable all the time!" when I was about 16. I figured that out by the time I was 11 and I date my come back from deep depression from the things I did at 11 to take over my own life. If the in-crowd didn't like me, I could find the other kids who had no friends and be friends with them. That really worked very well as I discovered at 11. So well that the in-crowd wanted into our crowd. I could find the things I liked doing and the things I liked having that were free, and go and do those things. I could go to the library every day if I wanted to and take out another stack of books as long as I took them back in time. There were parks and playgrounds where I lived if I walked far enough. I might not be able to buy stuff, but I could look in the windows. Etc.
All of that is also available to we caregivers. I can spend my life crying that I had to place my husband, or I can start the slow rebuild of my life. I can choose to allow my body to further deteriorate, or I can start physical therapy (as I will be doing next week) and come back as far as I can with medical help. I can live in a house were all the technology has broken and no longer works, or I can start replacing all the broken "stuff" which I have now done (took me three months and I've got one more thing that should probably go).
I can make new friends and locate the new interests that will take the place of the old ones that I lost during the hands on portion of caregiving. I can take baby steps or I can live in the fog of anger and depression. It really is my choice.
You said that so well. Thank you. I don't want to end up like my aunt. She came to this country from England in 1952 to marry my uncle, whom she had met when he was stationed in England. She was full of spunk, independence, and energy. She had to be to cross the Atlantic by boat all alone to a strange country. She seemed to always have that independent spark. She endured many catastrophic illnesses, but still kept going. Then, 4 months short of their 50th wedding anniversary, my uncle died unexpectedly. Knowing her personality, I figured that after awhile, she would come out of her depression and find a way to live a good life. I was wrong. She remained angry, bitter, and lonely until the day she died alone in bed 5 years later. Sad, sad, sad, and I don't want to suffer the same fate. I have to make the most of what I have no matter how difficult it is.
Me too Joan and Starling. You could take the assumption that we SHOULDN'T be upbeat and extrapolate to include everyone on Earth who hasn't had an easy time of it. In which case there should be practically no positive-thinking people in most of east Africa, most of eastern Europe, much of Central America. Furthermore, no one who has ever been close to a person who has died prematurely, for any reason, should ever display happiness again.
Just to be clear, by the time we eliminate the right to have a positive attitude from everyone in the above categories (plus the ones I've neglected to mention,) exactly what percentage of the human species may smile and laugh?
Yes and part of this, while knowing that this is a fatal disease, it does not mean we focus on this fact daily...I find I tell people when they ask how he is that this is a fatal disease..it is not a disease where there is some hope of recovery..That some days are better than others and some days I want to put him out in the yard with a sign that reads FREE TO GOOD HOME" It is so stressful. But all in all, the fact that he has been such a good man all these years, so sweet and generous, I would not trade him for anyone else.
You made me laugh out loud at the sign idea. That is so funny, and exactly the way I feel sometimes. The therapy office is in the AL building, and today, when the therapist told me that she would walk Sid on the path back to my house after his session, I told her that she could keep him.
Yes, it is the memories of what he was and what used to be that made me let him back into the house (<grin>).
Hey, MIMI, could you get those signs printed.... that would be aterrific business for you. I know people who would put their kids out there also. Yes, you can choose to be happy.
I haven't written anything for awhile - there hasn't been much of anything to write. I write a lot on FB - so much in fact they keep kicking me off. As for age, I am 68 - going on 168. I have aged more in the past 3 years than I have in the entire latter half of my life. Do I want to live to a happy old age of 82+ - not if I have to spend the entire time alone?
I hate being alone - sleeping alone, eating alone - living alone. I cannot think of a worse punishment for anyone. I find it so difficult to get out of bed in the morning knowing I will be drinking my coffee alone, reading my paper alone - do I have to go on??
I would bring my husband home in a heartbeat if there was any way I could care for him. Even though he cannot speak, sit, stand or do anything for himself - that would be OK. I wouldn't be alone.
I don't know who I am any more. Last week on FB someone from Prevention magazine asked how do you RECOVER? It was like hitting me in the head with a bat. How do we Recover, what do we recover from. I don't know what recovery is - much less how to do it.
I have moved on as much as possible. I am taking 3 courses a week, I attend a support group twice a month, I had 2 major surgeries this summer, I am learning yoga, made a few new friends. What next?? I had a roof put on the house, a new drive way, new kitchen window installed - I am certainly not sitting around on my hands doing nothing. I don’t think I am crying in my beer so to speak.
I have a counselor I see twice a month. I still have a house to care for – unless/until I decide to sell it. At this point that is not an option. I now like my house and I am comfortable here. It requires a lot of upkeep – so far I have had several people step in to help with the work.
I am still busy with Project Lifesaver – and community work. I go to the NH as often as possible. My therapist has pulled me away from going everyday – now I go every other day. It is still not any easier for me to leave for home and have to leave Ronnie there. Does it ever get any easier? How much longer will this go on – I too am told it could be any day – or it could be another 10+ years. I know I won’t make it that long.
I am so alone – I am not lonely, I don’t think. I don’t have the time. My calendar is full. I will be helping with a Buddhists’ meeting this weekend and I am going to walk a new labyrinth in the very near future. I am practicing Tai Chi and learning meditation. I keep myself busy – but I am still alone. I go alone, I come home alone – I live alone not even knowing who I am. I cannot last another 20 years alone. I don’t think we are intended to be alone all of the time – where do I go from here. If you have any suggestions about dealing with this aloneness – please do not hesitate sharing the same - either here or on my page on FB.
rbosh---It appears to me you have been stuffing your life with activities to fill your time, as a way to escape te aloneness, but it isn't working. I think you need to stop. Think aout all you've taken on and decide what has meaning--strong meaning for you. Keep those things and deep 6 the rest. In hese last Stages of loss iut is normal to fell alone; to feel abandoned; to mourn our losses though our LO isn't fuly gone yet. To RECOVER from this loss we need to be alone, for a while, and then to start refilling our lives with meaningful things. We need to chose things we relate strongly to, that matter. We need to chose some fun things--short term , or long. But, what chose needs to fill the alone places, and that takes time. You said it yourself--you're keeping yourself busy--but you're still alone. Instead try to do less, but with more in depth commitment, and reach out to the others involved in those things. It will take time, but the spans of aloneness will shrink. That I think is recovering--building your AFTER, a bit at a time.
I think about this issue of being alone too, sometimes. I wonder what I will do or even where I will be. I think about how a friend managed after her very painful divorce. It was a terrible ordeal. I even helped her move out to get away from her abusive spouse ( mental abuse). Thinking about her, she set up her rental house and made it as pretty as she could. She has a strong group of friends from her church with whom she is in contact with and they helped her over the humps. She finally got her house back in the settlement. She had a fair amount of ups and downs with her kids views etc so she had lots of stress and physical issues too. She did what carosi suggested...she stays in touch with her friends from church and her teaching friends, she took her house, which her ex let fall into disrepair and started to dream about how she would fix it up and then set about doing it..It took her 5 years to get it all repainted, rewired, roof etc and she delighted in each new fresh change and as she went along her mood began to lift. She is lucky that before her divorce she had a strong social circle. Not all of us have that. You mention you have made some new friends. I would think that would be worth cultivating. and keeping up with the Tai Chi..stretching is very important ( and I m in PT now for this). And I think the rest of your activities should be surrounding what on the list you have gives you the most pleasure and satisfaction. We can over do our projects to the point we become frustrated and exhausted. And there is another thing to consider..A friend of mine once was running and exercising and filling up time and going going going and one day I asked him " What are you running away from?" and it caught him up cold and he decided he needed to think about that. His wife was going through the great Pause and he had no clue about how she was feeling..I gave him a list of books and told him to get her to the doctor for a check up and see if that was at the root of her new moodiness. It was. I can't help but think that as all of us go along on the journey with our LO that we find ourselves in one way or another running away from something.. running away from the last stages, running from the legal issues, running from fear of being alone, and we don't know what to do and the truth is somewhere in all this running we are running from ourselves because we don't know who we are anymore. I ask myself what do I want to do when I grow up and I have no clue...so I do understand where you are coming from...it is like being a senior in college and knowing at the end of the semester we graduate and then are expected to be on our own and we don't have that job and don't know where we are going to live or how we are going to manage...there is a lot of frightening things out there. Somewhere there has to be a trusted person from whom we can feel safe with advice and support. In my case I don't know who that is yet...But I suspect I might have something to do with animals later on..I find them to be understanding, supportive and all giving and accepting and I might end up as a volunteer with an animal shelter..I'd want to adopt em all.. I think we have to sit down and think about what we would really love to do and figure out how to get there..maybe photography from me as well.. I am glad you posted this problem as it got me to thinking and I would bet we all need to do more of that in our quiet times.
Joan--it would be interesting to hear more about the person who inspired your blog--the one who thinks you are annoying and preachy. Thnking back over the 5 plus years since dx, I can only think of one person who was critical of my attitude (to my face). That person said I talked too much about my DH--and although I was surprised, I realized that she has some serious emotional issues of her own going on, and that was the source of the comment. Ironically, she is now involved in dementia caregiving, has asked me for advice, and I think her attitude has changed. But back to your situation, it is hard to fathom someone having that reaction; would the person prefer that you fall apart?
I'm a Pollyanna, Goody 2 Shoes, the peacemaker, bridge over troubled waters, but I can also be hard as nails. Lincoln said that most people are about as happy as they decide to be. So many things go into our +/- attitudes. One sister has had more personal tragedy than almost anyone on this board, certainly more than I have had--yes, there are things worse than AD. Yet, she never whined 'why me?' She just went on with life w/out complaint. Cry she did, but salwart in spite of it all. My other sister had a relatively easy normal life but, oh, how this was wrong, that was not right, someone said something never to be forgotten, running from this psychologist to that analyst, on and on, so many windmills to battle.
Early on in this AD journey I asked our doc about my feeling happy at times when I knew what was happening, how can that be, shouldn't I be sorrowful all the time. He knew me well, said I think globally. I've never been sure what he meant, but I just let it be, happy when I'm hapy, sad when I'm sad. I think we need both reactions for all the ups and dows that come to each of us.
Great blog Joan. I think if I didn't laugh/smile, I would start crying and never stop. I think people are sometimes shocked that I joke about the situation, but as others have said, you can't just get in bed and cry the rest of your life. Although goodness knows I DO have days when that is all I do. I think sometimes because I do act like I am not totally falling apart; others/family think everything IS ok and/or don't think I need help. Which isn't the case. So I do need to find a happy medium, I guess, of the positive AND asking for help...
When my DH was dx'ed 4 years ago, I slowly adapted my life to make his life the best it could be for as long as possible.But I found I gave up too much. I retired and couldn't pursue leisure time activities.I walked at his slow pace, so he could get exercise. I went on outings he might enjoy, not me.We couldn't go see foreign language films, or concerts anymore "to much music" he said. Until this past spring. I attended a caregiver's conference sponsored by a company that owns residential care facilities. Most of the attendees were children of AD people not spouses. So I felt cheated. There was nothing there for me. As I walked home, I realized what I was so angry about. These, mostly women ,did everything I do, but they get to go home. They get to have a life. So I took my life back, slowly at first, but definitely. I joined a memoir writing class. I am writing a book about my caregiving experiences so others can have the benefit of my mistakes, and challenges faced.I started making friends at the gym, telling people about my life and what I needed from others. People listened and are supportive. And I am arranging to have helpers come to visit, or to take my husband out for walks in the neighborhood so I can have some free time.Sometimes I do a chore for them, sometimes not.Since folks know what I need now, they often volunteer to spend a few hours with my spouse for me to go for a walk alone, or shopping. I do have a more positive attitude than I did before, when I was in my martyr stage. I know I have to take care of myself so I can be helpful to my husband and so I can have a positive life myself before he dies.Because who knows how long any of us will live? Phyllis9
Phyllis you were right about the martyr stage. Nobody likes a martyr because they think the person has set themselves up to be better than anyone else. Of course we know it isn't true. We're just too tired to regroup.