Hi everyone; I have not been on in a while but was reading todays blog. All I can say is everyone goes at there own speed in dealing with a spouse with AD and also the adjustments and recovery when they are gone. I feel blessed that I am moving on but most of all that my sons are moving on in a positive direction as well. My wife there mom will be with us always but we all have been able to move on with our lives and learned a hard appreciation of just how precious each day we have is.
I'm feeling shamed over my feelings, but they are my feelings so I'll let them stand on the chance reading them someone might feel less alone in theirs.
terry-please don't ever feel ashamed about your feelings. We can't control how we feel. Sometimes we can control how we act on those feelings-but only sometimes. I'll be going on my merry way and suddenly feel crushed to the ground.
terry, people are just trying to be inpirational, and not critical. Life is a roller-coaster, but life around AD and afterwards can be a monster roller-coaster. Things change for the better and for the worst, including our feelings, and it's ok to feel the way you do, but remember that they are not cast in concrete, and are 'subject to change'.
I think my feelings are along the same line as terry's. I know that I will have an After (if I don't get hit by a bus tomorrow), but I do not know that I will have the energy to DO anything with it. I have been a widow, my first husband died with I was 37 years old of a massive heart attack. In those first heartbreaking, devastating weeks, I was sure my life was over. But it wasn't. I had my 3 girls and my first granddaughter had been born just 3 days before her grandfather's death. I had much to live for. And I did live. And I met Charlie and I fell in love with him and with life all over again. We had 20 glorious years and so far 3 years of hell. I am only 61 but I do not know how long this horrible journey will take and even if he died tomorrow, I do not know if I have the energy to start over for a third time. My time and energy go to working, which I must do to live and spend as much time with him as I possibly can. I don't do this because I feel I have to, I do it because I want to. I see only an empty hole in my life when he is gone. I know that time heals, and maybe after a while, I will be able to think about starting a new chapter in my life. Right now I can only manage to take things one day at a time.
I think just about everybody who has ever posted on these message boards has gone through moments of despair, when they wonder if they are going to live through being a caregiver, and if they will have anything left to go on with afterwards. But as this goes on, year after year, and I become older and more exhausted, more isolated and ill, more and more ground down by caregiving and one loss after another, those moments of despair come closer and closer together.
In the past year, I've added to my toll of losses or stresses complete financial devastation, an excruciatingly painful surgery, being diagnosed with stage 3 kidney disease, and the loss of several family members. Where, exactly, is the UP side in all that? I realized during this recent surgery that we don't even have anyone to call for help in times of need, so I have muddled through as best I was able, which has not been very successful. I was supposed to have a second, even more major surgery in a few months, but know now that it's not possible. I could not possibly go through it by myself.
Years ago DH and I saw a show on PBS that showed some rural Chinese ladies following custom as they reached an advanced age, and going to have their death portraits taken. You would think that would be sort of a grisly thing to do, but several of the ladies went together, and were having a good time with it, and laughing. When someone asked them how they could be so cheerful, knowing what the pictures were for, they said that was exactly WHY they were able to be cheerful. It meant that their long lives were nearly over. They knew that they were reaching the end, and knowing that made them happy. No more struggles or pain or unhappiness. They could celebrate their lives, knowing that all the pain would soon be over. As I get older, I understand that point of view more and more.
All of us have lived lives of varied circumstances. Some of us are more or less resilient than other people. I feel like I have done my absolute best to make a life during the last seven years of caregiving, and during the decades of chronic pain and disability before that. But at some point, especially given poor health, you just wear out. When each succeeding year only brings another decline, another loss, another grief—well, it's hard to keep going. There won't be any trips for me, or going back to school, or redecorating a home. Lack of money and poor health have taken care of that. My family has shown me in thousands of very, very painful ways that I'm no longer part of the circle of people they care about. Again, please do tell me where the positive areas are here.
When DH was able to tell me what he thought, he told me many, many times that he admired how I kept going when things were bad, how I didn't give up, how I kept my sense of humor and made him laugh even when things were pretty dire. But eventually you do run out of steam. I have fought and brainstormed and worked and planned, and things have just gotten worse and worse and worse. It's not like I gave up and just let things happen. But sometimes you just don't get a good "after". Sometimes we don't get a good "right now", either. And I refuse to let anybody tell me that it's all my own fault if things don't work out in a positive way. That's just not true. Sometimes there just is NOT a positive outcome, no matter how hard we try. Living with this terrible disease should have taught us all that much.
Jan and everyone else....as I read here, my tears flow. My emotions have been all over the place recently (always, actually). I have nothing more to add. This trip we're taking is a horrible nightmare. I DO NOT believe the people that seem to have all the answers...the folks that have tips and tricks and solutions for all the troubles we face, whether our spouses are still at home or in a nursing home. Everyone is on this journey at their own speed, and go in different directions emotionally...sometimes with reason and order....at other times, without rhyme or reason...craziness.
I just wish, with all my heart, that each of you could come and visit with me. I'd so love to meet each one of you, my friends. Jen
Jan, I hear you. Physically I have been healthy although the last two years I have gained much weight. Mental/emotional pain have been my demons. Growing up when my dad would beat me, my brother and his friends would tease me, my mom always said 'you must have done something to deserve it' - followed me all my life. When I was 17 for my birthday my 7 years older than me boyfriend raped me. But I did not look at it that way due to a life of sexual abuse and went on for a 1 1/2 years. I loved the affection even if I had to trade sex for it. He left me and married a girl 1 year younger than me.
When I met hb he forced himself on me and that is why I married him. After the other guy, I vowed if I ever had sex with someone outside of marriage I would either marry him or kill myself, so he married me. Fast forward 1983 when he talked me into taking a 14 year old girl in as a foster daughter. She lived in the mobile home park we were in but her dad was a drunk. I did not like her after she moved in and caused a lot of problems with our kids ages 6 & 7. In 1984 we closed our business and moved - he talked me into taking her with us. The next year I found out that they had been having an affair for the last 1 1/2 years - part of him hoping she would get pregnant and give him the child I couldn't. I endured sitting in court listening to the judge repeat over and over 'a 14 year old not your wife'. We had a 200 mile drive home where I was curled up crying the whole way (a man from our church had driven us). If this had happened a year later he would have had to register as a sex offender for the rest of his life. That is when the psych Dr diagnosed him with 'detached personality disorder'. I have tried to convince myself this was the start of AD. After 30 days of work release, 2 years of probation including 1 year of counseling of which he was declared a rare one to be cured, we were free to continue on. Our kids did not find out until their late teens what had happened. The whole thing financially devastated us including being homeless living in the park in tents. The only one in my family that knew was my brother a year older - the one that tormented me growing up. He offered no help, I was too ashamed to tell anyone else in my family, so we were on our own except for a handful at the new church we were attending - those that were not repulsed by what he did. We had hot sex until after his probation was over, then his ED started.
I sucked it in for the kids and went on until 1995 when I finally went into a deep depression. Our daughter was 16 and started her rebellion and hurt because I could no longer be there for her. I stayed with him believing the courts would go easier on him. It was only 3rd degree statutory rape because the courts believed she was the instigator in the affair. Both wanted to be together but the courts would throw the book at him if he tried it. It was in counseling I had to face that my hb was no different than the perverts who sexually abused me. I also defined why I did not leave him in 1985: because I believed I did not deserve any better. In 1985 I told him about my bil raping me when I was 12 and he had a typical male response: why did you let him do it? I also learned I wanted my husband to not be sorry for getting caught - I wanted him sorry for breaking our marriage vows, his promise to me. He has never said that and never will.
There is a part of me that is happy he has this: he deserves it for all the hell he has put me through - his just punishment. I know that is not true. But then, he is not the only one with it - I am too. I have to go through yet another illness with him - something I must deserve. We never really recovered from 1985, so the financial battle still goes on. He would change jobs every couple years which also meant a lot of moving to get closer to his new job. Seems like just when things are looking up, something happens to pull us down. Just when I think we will have stability, something happens to blow our lives up again. I am sick and tired of it. I am sick and tired of starting over. Sick and tired of pulling myself (and hb & kids) up to carry on. Yes, I have had hb to do it with - he would work and I would set everything in motion. I am sick and tired, sick and tired of life.
part 2 My mother brought us girls up to be independent and self reliant but that has never been me. I gave the impression of it but underneath I was just surviving - hanging on. I am afraid, tired of being strong, the one in charge of finances and everything else. I often wonder what it would be like to have a man to take care of me, be equal partners, to say nice things to me, say he loves me and mean it (not just for sex). I read stories of marriages here that were like the 'Ozzie and Harriet' and envy them. I can not imagine such a life but that is why I love the old shows like Ozzie & Harriet, Leave it Beaver, Little House on the Prairie, The Real McCoys, and the list goes on -escapism. It was living thru their happy lives that gave me hope as a child. I have lived 57 years with only short times in our 39 years of marriage that were close to that. But they were but brief moments. I have 'acted' my way through life, pretending I am happy - I don't even know what real happiness is. I have done what was needed to survive but there was a price to pay.
I know I should be grateful I have had my health. There are those like Jan who have fought physical illnesses all their life and they too are sick and tired of the battle. When those who have lost their spouse and rebuild new lives, maybe they will give me hope. But who would want an obese woman? I can't even get a job. If I had one, at least I would not have so much time to sit around I see what I have to look forward to. I can't even remember the last time I really laughed - a happy laugh.
I agree - there is not always a positive outcome. In counseling in the 90s I claimed to be an overcomer not a survivor any longer. I overcame most of the effects of the abuse but this disease has seemed to trigger again. Healing/recovery is like an onion - it comes in layers. I reckon it is time for another layer but I don't want to go thru it again. I am believing, as in the past, my faith and love for my Lord will get me through it.
Charlotte, my heart goes out to you. You MUST be strong simply to have survived all this and still be here on these boards, testifying to it. You did not deserve any of the abuse, certainly not the abusive marriage, and certainly not the AD spousehood. Life is not fair. But you can continue to be strong enough to see it as a challenge, and survive. Hang in there, and know you have a crowd of folks here rooting for you.
What a dreadful disease! Yes, after so many years of the different stages of Alzheimers, the caregiver spouse's emotions are so very wounded and fragile. Yes, some of us, have had so many other hurts in our lives and it goes on and on. I am a calm, positive person, I know "the sun will come out in the morning," but when we are in this thing for so many years, and it STRIPS some of us of EVERYTHING, we do feel fininished and tired, but somehow we will go on after this is disease has ravaged it's course. It is very hard to diet, put on a happy face, enjoy things, as day after day, we are dealing with this. For some of us, it has been hardcore Alzheimer's care. I am 59, have tried to keep myself physically and emotionally going- but I am tired. It is 1 A.M. in California. I just placed my husband 63 in a nursing home. He is total care, can walk slow and shuffly, totally confused, only knows he loves me and wants only me. While driving him to the NH, it was like I knew this was it. I kept him manicured, safe, well kept, now I have placed him. He is nice, but with the change of bed, routines, lights, noise he has been combative 3 times. I placed him 05/26/10, but I have non-stopped cried for 2 weeks. Can't stop crying. Crisis Hotline said ALZ has been an on-going death- now another death, and that ALZ keeps having different death processes. My love, my sweet husband is drugged, afraid, and family tells me to be happy, I can breath-I have an empty house, finances are gone, look at my mate among a "sea" of very old patients, I am sad, sad, sad. We will pick ourselves up, after all is done, but while some of us are in the tail end of this, we do feel weak and tired. I hope spouses who are not at the total care levels of this disease, do remain totally happy and have real smiling faces, but for me, 5.5 years of this stripping of his life and mine, has made me a weary crybaby- I am only human.
Jan, if you lived near me, I would be right there. I would watch both of our husbands while you had your needed second surgery, if I could. You need help. There are agencies who can help you, even if your husband isn't Hospice qualified. If I knew where you lived, I could see if I could find out for you. Ask Joan for my e-mail address, please.
With my comments earlier, I did not mention those in ill health, or those with extenuating circumstances. You and some of the others are in that category. There is no way you can be hopeful when you are in ill health, or just had to place your husband, or just been through "heck in a handbasket" - There are times we all wonder how we can go on. It takes all our mental energy to get through the day. These feelings can pass, and we need each other to lean on to help us emotionally get through these rough times.
Love and hugs to all of you....you make the rest of us realize how much we STILL have to be grateful for....and we wish we could make us all better....
Charlotte: You have helped me crystalize an idea that has been coming up for me this week. This is so hard for me with my husband in early stages (Lewy Body Dementia) because I grew up in an abusive family with a mother who believed her way of seeing the world was the only right way and who wasn't capable of giving me the love I needed. Now my husband's illness is recreating that situation. I struggle to believe in what I see when he denies it and friends say "he seems fine to me." And he isn't capable of being a partner or meeting my needs any more. It is so hard for me just to go along with him, though I think we are getting to the point where that is the best strategy. And he puts on a good enough show to convince the therapist we go to that there is still hope of working on the relationship.
I'm one of the people who remind themselves every day that MY attitude is MY decision and I can choose to be happy. Does it work all the time? Of course not. But if you LOOK for the blessings of the day, it is interesting but you do find them. Or at least I do.
I've also gotten to watch several people go through the end of their journey through this site in the last 2+ years that I've been here. The ones who still had lives got through in much better condition than the ones who did not. Because of my family situation (tiny immediate family, I'm the youngest of my generation so all the siblings are dead, extended family disappeared from my life so long ago I didn't know they existed until I did the family genealogy, etc.) and moving all over the country during my married life (lost multiple sets of friends that way), I'm pretty isolated. Total isolation would have been very easy for me, and that would not have been good now or in the future.
I'm the one who coined talking about AFTER in all caps, by the way, because I couldn't say the words, "My husband is dying" and needed shorthand for it.
I do not believe in covering up real depression, or even sadness over the condition of our loved ones with happy face. I believe in noticing the good things that really are in your life. They are not the same thing. Do you have children or grandchildren who love you? They count. Do you have a great doctor? That counts too. Do you have caring friends or neighbors? One more blessing for the list. Did someone have a kind word for you today? Write it down. Does it do you good to come here to Joan's Place? Write that down on your list of blessings. You don't have a list? START ONE.
pamsc, why are you going to couple's counseling? If you have a therapist who thinks that is appropriate for anyone with dementia you need to fire them! What you need is a therapist who understands caregiver stress. Therapy is not appropriate for your husband at all since he can't actually do therapy.
One of the people on my list of blessings was the therapist I went to for a short while when I could still leave my husband alone. She "got it" and was horrified when I told her that some of my online friends had been sent to couple's counseling. She knew it was a waste of time, and she wasn't dementia experienced.
I have been reading all the posts on this thread and I have no idea what I will do AFTER. Maybe because it seems so far away or I will do just as I do now...take it day by day and hope for the best.
Starling: My husband thinks he can do therapy. What am I going to do, say no? I also see the therapist alone and he gets it that my husband can't change, he just falls back again into thinking that open communication is good.
Get the therapist to tell your husband that you each need to see a therapist separately. Maybe then some of what you are doing will do YOU some good. And maybe you also need a separate therapist just for you. Even in couple's therapy they do that some of the time.
Frankly, there is no such thing as "open communication" when one of the people has dementia. Instead what we, the caregivers, develop is strategies to get things to happen. You may or may not yet be at the stage where you need more than to learn not to start discussions, or you may be at the stage with little fibs need to be told. When my husband starts asking for his mother I am NOT telling him she is dead, for example.
I'm lucky, he is not yet looking for his wife, but when he does, she is going to be off shopping or on a little vacation.
I just read through this whole thread, trying to come to terms with how I feel. Today, I feel great! I can do anything! Life seems good and my husband is having a good day. But, I don't know what tomorrow will bring. Tomorrow, things might be as different as night and day. I feel sad for the ones who can't see an AFTER. As bad as some days are, I could never envision a time when I wouldn't want to live. I prefer to think about the good things I have in my life, even when there are days when my husband acts as though he hates me. I know that isn't true. I know he loves me, he just can't help the things he does, and I have to try to remember that. I admit there are times when I feel like running away. But, I know I could never do that. I have life, truly the most important thing. I have a wonderful family (I know some of you don't and perhaps that's why you feel there will be no after). But, even though I have a wonderful family, there are times when I feel very alone. But, I know I can come here when I do. It's truly wonderful to have a place all my own where I can go to relieve myself of the terrible burden of dementia. What would I do without the caring people on this website?
Starling, your words of wisdom are inspiring. I intend to make that list and everytime I feel as though I can't do this anymore, I'll read that list and realize I have more good things in my life than bad and, hopefully, it will help get me through the really difficult years to come.
The gratitude list has been my life saver. At the moment I've got this little book and I make a short list every day for that day. In the past I've had the long list. Both "systems" work. The more you notice good things, the more good things happen.
Look, this is a horrible journey. But truly it isn't the caregiver's journey. There are things to learn while we caregive, but this is not our disease. If you don't care about AFTER something is very wrong. You have stopped taking care of yourself. And like they say in the airplanes before take off, you have to put your own oxygen mask on before you put the mask on the person you are caring for. Because if you collapse who will take care of them?
This was brought to my attention when I saw a replay of THE FORGETTING a couple of years ago on PBS. It had been 4 years since the original was on the air. Both couples were dead, and in BOTH cases the caregiver had died first.
I like that analogy, Starling...put your own oxygen mask on first. I feel much the same way you do. I choose to live. The wall is up most of the time in order for me to do this....and everything I need to do every day. I'm not the caregiver anylonger. Its harder and harder to visit John. My emotions bang around in every direction if I let them (especially after seeing him). Im reconnecting with friends I had horseshowing. I'm setting up my barn as a business, training, etc., in order to have a life once more and get out to meet new people. I need to find a church or temple someplace nearby to be part of a spiritual group....I feel I need that extra connection to my "higher power" which is God. I am beginning to recognize more and more my blessings each day....have found that it's NOT that God isn't listening.....it's ME that isn't listening.
DH and I are fine if we stick to his routine every day. He has his breakfast, watches TV, has lunch, the same everyday. Then, he watches more TV, snoozes, has dinner, watches TV, goes to bed. I work around him doing laundry, paying bills, cleaning, cooking, etc. However, this is not life. He won't get exercise, his legs hurt. He won't go shopping with me. if anything out of the ordinary happens, look out. Last Tuesday my brother died. He wanted to go with me to the funeral. This involved flying into Philadelphia, renting a car and driving 140 miles. He had a hard time remembering why we were going, why we were there. On the way there he asked me, now what is wrong with your brother?. After spending 5 hours at the wake, he wanted to know who was getting married. He was so confused, but everyone remarked on how good he was, how appropriate. I was so upset about my brother's death and he had no idea what was going on. By the time we got back home I was exhausted, as much by taking care of him as going through a difficult time.
I think my point in all this is: how can I think of after, when right now I am so engaged in every detail of his life, like making sure he changes his socks, takes his medicine, showers. I know we still have a long way to go. He is still continent.He can dress himself if I put his clothes out. He sleeps all night, he doesn't wander. But, he wears me down. He is like a 4 year old at times.
maryd, I can so relate to what you have described! Went through the same thing when my son had his transplants a few weeks ago and we had to drive almost 400 miles. Now, when I talk to my son, who is back in the hospital, I have to explain again and again, what the problem is/was. He just cannot remember from one moment to the next. It is wearing on us, isn't it? BUT....I am so thankful he will still shower, shave, brush teeth, sleeps well, doesn't wander, fixes his cereal for breakfast and sandwich or pizza for lunch; and sooooo many more things he does do.
I am so sorry about your brother. Please accept my deepest sympathy.
Maryd and Vickie, our DH's must be at about the same stage. I so relate to what both of you said, especially about breaking their routine or traveling. My DH can't remember where we're going even if it's a doctor's appointment here in town and, bless his heart, he still talks about when he gets better and can start driving again. I'm so thankful he can still shower, dress and shave but I know it's a long hard road and maybe too soon for us to think about "after."
Be thankful...The only thing in the above activities that mine can still do is brush his teeth and that is because he doesn't get a piece of gum until he does. He is continent during the day, thank Goodness.
Be thankful - mine is now bedridden, having fallen out of bed once a week ago, and then collapsed Thursday night as we were trying to get him to bed. I refused to take him to the hospital (among other things, Memorial Day weekend) and have Hospice coming out to evaluate him. Meanwhile, he's in his hospital bed which he's had for years, both sides up now, he can't stand up, I can't get Depends beneath him reliably, and today he's eaten very little. Just sleeping a lot. His legs or hip are not broken, I'm reasonably positive, because there is no pain, and because after the more serious fall he was up and around for a couple of days.
My husband is about the same level as those mentioned above..so I try to feel semi good about daily life now as I know it is going to get very bad in the future...that said....I still get so angry with this empty boring existence and damned disease. I can't truly feel positive all the time...but know negative feelings hinder everything. Guess I'm just lousy at "sucking it up".
maryd, there are actually two questions here that we are discussing. One is how can one think about AFTER, when I'm so exhausted just trying to get through today. I get that one. I'm in that cycle myself to some extent.
The other one is how can one think about AFTER when my spouse is dying and once they are gone there won't be an AFTER for me.
...[sigh]... A little background here. My father died when I was 4 years old. I had two teen aged siblings, one already finished with high school, the other in high school, and a mother who was 36 years old. She had been a wife for 18 years, but she lived to be 74. She was a widow for most of my childhood and all of my teen aged years. And she believed that once her husband had died, she no longer had a life. For FORTY YEARS!!!!
I don't remember what life was like when he was alive, but I do remember what life was like once he had died. Believe me it was no picnic living in that house for the next 15 years. I got married at 19 which was no longer typical at the time I did it, but I NEEDED to get OUT OF THAT HOUSE!!!
I was a pretty good mother. I based it on looking at what my mother had done and doing the EXACT OPPOSITE. Worked pretty well. I'm going to be a good widow. I'm going to look at how my mother acted and do the EXACT OPPOSITE. And I fully expect it to work pretty well.
kathi, it is perfectly OK to feel angry, bored and pissed as hell. You don't need to "suck it up" either. I frankly don't think pretending everything is wonderful works. And it isn't the same thing as noticing that the diner had their wonderful baked sausage over spaghetti for lunch today and that I enjoyed it. I'm not pretending I enjoyed lunch. I DID enjoy it. I'm just noticing that I did and writing it down as one of today's blessings. It is in the 90s around here so I'm counting air conditioning as a blessing as well.
I'm pretty stuck in the house with someone who can't talk to me as well. I'm reading some interesting books that I discovered by going to Amazon and Goodreads and working their systems. I don't seem to have the energy to start any kind of craft project or to work on one if I did start it. And I don't get uninterrupted time either. I tried to force that, but I'm just going to let it go and see what happens. I've just started getting some respite, and tomorrow I'm going to see if there is somewhere I can take a short class during that once a week respite.
Thanks Starling...backup does help. I have respite once a week for four hours..tomorrow is the day and I have zero idea what I will do, but it is an "out" so I'm taking it and smiling.
Starling, Thank you for sharing. Some of us had difficult childhoods. My mother always called one of us home from school when she thought she was 'dying'. She died at 92. I am sure there are many more stories out there. My father died at 49. I was 20. but my youngest brother was 8. You are stronger from what you endured, as I did and my 5 siblings. It seems not fair what is happening now.