I can't remember if I mentioned this before, but I copied and printed all the condolences I received here on Joan's and stapled them together and put them in with his final papers. I found them this week while I was going through some things and it was wonderful to have them to keep. I recommend doing that.
Me too, lmohr. I printed out the condolences from Joan's; also the ones from the online book connected to his Obit(thee wereonly a few), and put them, with his Memorial book. I have the pictures we used to make the poster collage with them. All will go to my Daughter eventally, for her kepsake box for the 2 of us.
I tried to do that too but it didn't work. I thought the sentiments from all of you were so beautiful that I wanted to keep them along with all the sympathy cards.
I don't know if this has been covered before, but do any of you find yourselves more impatient with difficult people and situations than you were pre-AD and the loss of your spouse? I do. I'm wondering if it's because I'm older (83), or angry because of the many battles I had to fight while caregiving. Or is it because I'm still grieving, or stressed out, or lonely, or soured because so much went out and so little came in to replenish? Of course, I would like the world to be a more civilized place than it is right. And since I have no control over it, I would like to be more mellow. How much should we protect ourselves by withdrawing, or how much should we keep striving to make it a better place?
mary75*--I find that I'm mildly irritated when I hear a woman complaining about some trivial fault her husband has. I feel like saying "you think you have it bad--get over it--my husband can't even do things a 2-year old is capable of". I think our caregiving years inevitably change us and make us react to people and situations in a different way than we would have previously. It has even rubbed off on my friends--one told me of an acquaintance whose husband was ill (temporarily). My friend said "she's been carrying on more than you have the whole 8 years with Steve's AD". Interesting, huh? Perhaps you can find a balance between impatience and withdrawal?
Interestins subject Mary. I find myself more tolerant of almost everyone and everything. When I have a clerk/wait person being distracted or rude, I now think that person must have a bad situation they are dealing with. We all have "situations" and now after being a caregiver for so many years appreciate that. I try and compliment people and it is just amazing the reaction you get after you complement the drive-through waitress about her nail polish or hair or whatever. It ALWAYS brings forth a smile and you never know how much you helped that person today - and it doesn't cost a thing - and even makes you feel better also. I try and remove myself from negative people as much as possible. I believe in being positive about all you possibly can. (I also stay away from Fox News, because it upsets me). Surround yourself with beauty and positive people.
I also would like to see the world a more civilized place. The news is mostly negative and is a downer. When I start feeling sorry for myself, I don't have to look far to see someone in a worse place than I am. I am so thankful for the many wonderful friends I have made here on this forum. You all are my closest friends. Being alive is WONDERFUL being happy is WONDERFUL. Take care all....there IS life after..
Mary75* I find this to be true as well. My method is to remind myself their's are not my shoes and I am not them, and then remove myself. If, however, I'm asked for advice/help, I try to encourage an emotional step back, and redirection of focus. I keep reminding myself---it's not my job to fix it. I can be concerned, but not the caregiver for their issues.
I think we can all wish to find what Imohr has found which I would call an almost complete acceptance where it sounds like she feels the joys of life.
I remember the joys of life but I'm in with Mary75 and Jean21. I don't feel or think the way I did before all this started. Most things don't touch me the way they did and I don't touch them the way I was either. I think it's a mixture of things like Mary said but obviously it's mostly what Alzheimer's did to us. I need time. I can see that when I truly take something on or keep attacking other things (like too much withdrawal), I do feel and I am involved.
We're still us and even when these massive shocks happen, most of the time we've been here we were that 'us' we now may just remember. I don't think that disappears as quickly as it may feel like.
I believe that if I follow what feels natural I will shrink because trying to stay strong isn't the same think as assessing what's actually happening. I lost her, I lost the life I had, and life has dealt me a hand that can't be described as anything less than extreme mental cruelty. Forget about yourself when assessing that. Look at Joan. Look at everybody else, not yourself because you'll never see yourself objectively.
And our objective in relation to that sounds ridiculous. Feel good and have more fun. Feel happy. Stay happy. Imohr sounds like she may have found that.
Mary75, I wouldn't have guessed a day over 70.
Jang, copy and paste works as Imohr said. You can also copy it into notepad.
Thanks to everyone for your understanding and helpful comments. I appreciate them and all of you. Fighting for Eric made me too strong, I think. It's time for me to mellow out. Carosi 2*, the "stepping back" is exactly the right and practical strategy for me. Perhaps because of my Irish Catholic background, I have a strong sense of injustice. And my tendency has always been to fix things. Now to work on striking a balance.
As usual all of you have expressed yourselves with good ideas and suggestions. In my case, I am so sensitive to others peoples kindness that I notice even the smallest smile or facial expression. And I am so grateful to them even tho they will never know how good they made me feel that day.
Like you, I have been to Hell and back and you can't make that journey without it changing you.
Another possible explanation that hasn't been mentioned for our increased impatience with people and things is that people and things have actually changed during the ten or so years that many of us were "away" taking care of our spouses. People really aren't as "nice" anymore, what with probable bad humor about the loss of paper fortunes in the real estate crash, disenchantment with government mishandling of the economy, personal piercings and tattoos that we older folks have a hard time understanding, coarser content in the movies and on TV, face-to-face communications supplanted by texting and tweeting and inconsiderate cell phone behavior, etc. And my pet peeve is with restaurant waitpersons who say "not a problem" instead of "you're welcome" or "my pleasure" when I thank them for something.
Of course my Dado is still here, but I just wanted you all to know how much this conversation means to me. Lmohr* I am going to save your comments for my diary if you don't mind. Yes yes, I love you guys.
Mary75*, I am coming up to Vancouver from July 5 to July 19th, my Mom is really in need of a Patty visit. Maybe we can meet for coffee, I will be in Vancouver in the latter part of my trip. My email is still in my profile. It will be nice to come in cherry season. thank God I found a girlfriend to watch my house and cats..
This morning for some reason I understood the math. I was 55 when it became apparent Dianne had a serious problem. I'll be 63 in September.
One reason this is so hard is that I have lost almost a decade of my life where I don't have amnesia which at least would just be missing. My decade IS missing from any semblance of normal life but I know how I spent it - being cruelly tortured in prison for a crime nobody committed.
Nobody went to prison. It moved right into my home. There I was repeatedly punished for the slightest sign of any hope by the cruelest device imaginable - the slow destruction of my life partner.
When my Dianne passes I will still have 54 years of normal life plus 7 years of cruel treatment where hope and enthusiasm for life were beaten out of me continuously in trying to survive all those days for us. The hardship on me of watching her go through all the things they lose piece by piece wasn't even on the table. Suck it up soldier because nobody can afford your feelings.
I know what a polar bear who can't find an ice floe, can't find any seals, hasn't eaten in so long his stomach aches every minute, and has no choice but to keep swimming feels like. I know exactly and precisely what that bear feels.
And if you think that's overdone then you're very good at hiding from yourself the times you wished you would just drop or you thought you might just extinguish where I don't have normal limits on behavior. I did drop from exhaustion a number of times where my body just shut down where ever I was at that moment and passed out overloaded.
That doesn't happen because of our career, or from raising our children, or from working out differences in our relationships. That happens to an animal that has been pushed beyond all limits.
It's not necessary to pass out to understand. What is necessary now is that I find the two pieces of the jigsaw where I tie together my respect for what such a story means to anyone with the piece that is me and how I now see the world.
Anyone who has ever taken in an animal that has been mistreated for a long time and get it to trust again might want to tie THOSE two pieces of the jigsaw together. And as I write this I realize what my own mind is pointing out. The abused cat I took in in 2006 is still learning deeper levels of trust. She no longer bolts at any sound. She's no longer nervous when I walk close by. She's less competitive with the other cat and continues to learn to genuinely share the space and even like another cat. And most importantly, she continues to take steps toward conceptualizing her own wants and her own entitlements. She now accepts the treats are handed out equally whatever the more aggressive cat is doing and that she gets her patting whether the other cat walks into the room or not and rolls over unconcerned showing her tummy because she wants more instead of bolting because of the other cat.
I had meant to write this pointing out that I don't have enough respect for my situation and so don't approach it with enough genuine intent. And in so doing, my mind threw up the idea of an example where I already play that role which I had never conciously connected.
It's no suprise that I hadn't. Anyone who says they treat themselves exactly the way they treat others is a liar with few exceptions. What's funny is that the base conception I'm working with keeps being right - just not far enough. I need to learn to want fun and good feelings inside again. It's almost silly that it's such a simple and frivilous sounding thing. But when you stop and think about it, that is the imbalance and I am my own abused cat.
I change one word and I've got it. Not 'enough genuine intent'. Patient genuine intent.
Which is why when you push the animal too fast you get nowhere or go backwards.
We have been abused both seriously and over a long time through no one's fault by being the spouse. If no one nurses us back then we do not come back. We get older and the memories fade. Not the same thing as my abused cat would testify if she could talk.
If we are not kind to ourselves in that manner (at least in our fundamental belief to start) then we do not nurse ourselves. And if we are normal and therefore critical of ourselves or at least self effacing - then who steps up to that role? Where once again my cat if asked if such genuine intent helped her a lot would check "completely agree". If she could.
Dh's best friend and fishing buddy has begun the process of helping me price and sell all the workshop tools and lumber. I'm so thankful for his help. They bought most of the lumber together so he knows how to price it. I had no idea how many board feet or even how to measure a board foot. I work in inches and yards in my sewing. My mind tells me these tools need to be cared for and dh is never going to use them again - he was a master craftsman - but still -------. There is still all his fishing equipment - no one in the family is a woodworker or would use the fishing stuff so it needs to go too. Just another step in widowhood. I'm told the days get brighter and I'm still looking for that day. After 60+ years together all I feel now is very empty.
((Flo)) I think of you often and wonder how you are coping. 60 years together! I can't imagine how vast your loss is. I have been with Lynn since I was 18, we have been together for 28 years. It is hard to remember a time in my life when he wasn't part of it, the most important part. So when you say 60 years, no... I can't imagine. I am sorry you still feel so empty and I hope you will eventually reach a place of peace and comfort. ((hugs))
Thank you, Nikki. Dh and I went to the same church before we started school although my first memory of him is in first grade. Our families were friends before we were born. I, too was married at 18 and he was 19. He was definitely my soul mate and I'm thankful everyday for what we had but I'm also finding it difficult to want to even plan for anything ahead. I believe there is a plan for everyone and I know there is for me now to just accept what is.
Awwww Flo ♥ I think the ultimate goal for all of us will be to one day be able to truly enjoy what time we have left while we carry our loved ones with us in our hearts. I have never lost a spouse so I can only speculate, though I of course have given it a lot of thought, and it is painful just to imagine. I would suspect it would be like other significant losses, that there will always be that sense of loss, that feeling like a part of you missing. Sadness, but also joy for the wonderful time we did have. I guess we win that war when the good memories bring more smiles than tears. Give yourself the time you need, it is suppose to hurt when we lose someone we love so very much. Keep sharing with us Flo, we care ((Hugs))
Flo: Just noticed your post inre 60+ yrs. I also had 60 yrs and 17 days. My DW passed on March 14, and it seems so very long ago. We married when I was 19 and she was 16, so I have never been alone in my whole life. And I don't like it. Yes, they tell me that it will get better. I believe them, but, I wish it would hurry up and happen.
My gosh, you were just kids at 18 & 19! And you had long, loving marriages; beat the "odds" for sure. Maybe because you grew up together. Love to all of you who "grew up" together. You are very special.
Dave and I married when I was 18 and he was 22. We had 50 years together - and four children. Saturday is the second anniversary of his death. It won't be a good day. Dean, I still haven't adjusted to being alone. Our three surviving children live out of state. The first year I traveled a lot, being away from the empty house as much as possible. It helped. This year I have taken a few trips, but not as much as the first year. I am debating whether to sell the house. Right now I have to work, so I can't retire and move. When I can retire, I'm thinking of moving to a 50+ community that will have a lot of activities that I can get involved in. When you work full-time, you don't have energy for a lot of evening activities - or at least I don't! And it is a lonely life without someone to share it with.
I'm trying to move on. Some days are better than others. It is still an emotional roller coaster. The friendships I made here at Joan's sustain me. They have become my family. No one understands us better than those here.
I'm so glad we have this section for us to keep in touch.
Mary* - I find I'm on that roller coaster with grief. It has been just past eight months since his death and I was doing better and then the process of listing and selling his woodworking tools has begun and I'm down in the valley again. My children live nearby but one completely ignores me, one is too dependent and one helps out when asked. I just want to run away from it all. I think working would be a help but I'm almost 80 yrs. old so that is out. I do go to activities but there is always coming home to the empty house. You are right this forum is very helpful because no one outside the dementia world could understand. I thought I was grieving long before dh passed away but it was nothing to the grief of the empty bed and house and not even a place to go visit him.
Like you Flo39*, I thought I had grieved all the years I took care of Phil. I'm learning the grief I'm experiencing now that he's gone is different.
He will be gone four months on the 14th and I'm on that roller coaster with you. It is the coming home to the empty house after being out with a friend. It's the utter feeling of loneliness that comes over me without warning, the longing to be a couple again, hating knowing that what we had is over. My children miss their Dad but they have no understanding of how much sadness comes with losing your first and only love.
I know it will get better, my friends who have lost their spouses have told me so. I pray they are right.
It has been 3 1/2 years for me and I completely understand what you are going through. Others, who haven't been left alone - have no idea and cannot even comprehend the aloneness you feel. They will say they do - but it is impossible if you haven't traveled that road. That is why it is so important to stay in touch here at Joan's and with private friendships we have made with others who DO know.
It does get easier - if you let it - but I think we have to open up our hearts to accept our new life as it is now. We can bury our head in the sand and grieve until we die and we are just hurting ourselves. We are all working at it by the fact that we are here sharing our feelings and going forward with life that has changed drastically. We cannot do anything about our spouse being gone but we can choose to go forward and forge a new life that is quite a bit different and it is not easy at our age. My husband and I were also married at 17 and 19 and worked and lived together 24/7 for over 50 years. It is a whole different ballgame now but we will make it through, together. Take care...
Gourdchipper - Now every time a "wait person" responds my "thank you" with "not a problem" I think of your comments. Wonder what I'd say if they said it was a problem? I can't get used to wait person either. Oh well, age is telling on me for sure ;)
Loosing Kathryn has been harder than all the years of caring for her together were. I can only sleep when I am so physically tired I can’t stay awake and then I only sleep for 2 to 3 hours. Some nights I don’t sleep at all. I hate the loneliness. It is always there. When I don’t feel it, it is because I feel like she is in the next room.
My preacher asked me the other day if I was going to come to church and told him not until I am no longer mad at God for what he did to Kathryn. I told him I wasn’t mad about him taking her. I was mad about the way he made her suffer. I don’t get it. Why did he do that to her? It wasn’t right.
Jim, it is so good to hear from you. I understand the anger, there was a long period of time that I was angry with God too. Hands clenched in fists of rage, screaming out for the injustice of it all kind of anger. I wish I had an answer to help ease your pain. Have you spoken to your doctor about your lack of sleep? We are here for you Jim (((((((hugs)))))))
Anchor 20* - I completely understand why you are feeling this way. I asked my doctor about tylenol p.m. and I took that before bedtime for many weeks after Frank died. I would not have got any rest without it. As to why our loved ones had to suffer this way and then die? Only God knows that. I was told to rage all I wanted, He can take it and understands. But one thing you may understand is where all of us on Joan's are coming from and can add your experience for those still going through it and maybe help someone. Have you tried a Grief Share group? I found much help and understanding in the one I attended. Grief is tough - the hardest thing I've ever lived through --- add my hugs to Nikki's ((((hugs))))
My ambivalence or anticipatory grief pretty much kicked in almost two years before my husband's death. Neither I or his medical people expected him to die when he did and there were differing opinions on when he might die. Because the last few weeks of his life were such a deep and fast decline I was pretty much functioning rather than thinking. Oh, sure, I thought in terms of what needs to be done next.
But from mid 2010 until his death about a year ago I never "thought" in that healing and restorative way. Every day was fight or flight at least partially if not fully. And in the few moments to spare there was denial.
Pretty shortly after his death, things started to not make sense. Hospice, which I would do over again, called it "a good death" but it didn't seem good to me. HIs last night and day of life were full of sounds and smells and gestures that did not seem even remotely comfortable, let alone good.
So almost as soon as I was forming sentences in my head, ANGER was the first and most powerful. It was like if he had to die, for whatever reason, okay, but why did he have to suffer like that- not just that last night, but those final years?
This was only reinforced by finding and reading some of his journals where he knew at least to the extent that he feared what was happening to him.
Oh Abby, how difficult it must have been to find and read his journals. I got chills just thinking about it... so heartbreaking. I wish there was something, just anything I could do to help ease your hurt!...... know that I think of you so often and I pray comfort will hurry the hell up and bring you some peace. ((Lots and lots of hugs))
♥ Nikki, thank you always for teaching me how to do this.
My husband's journals were never really a secret; it is just that he had his and I had mine. His were thought oriented, from book and film reviews, to family conversations, to work, to our relationship.
When he said that he knew he was "sick" and not in the good way of current slang, he wondered what I would do if he died first.
Dear Nikki, I am pretty much exactly one week between the anniversary of my husband's death, and the ten year anniversary of my best friend's death.
I know you are anticipating surgery and if I have a (another) meltdown during that time, please know how much I cherish and appreciate you.
Thank you Abby ♥ I delayed my surgery so that I could be there for my Mom when she has hers. Death anniversaries are so very difficult, truly my heart goes out to you ((hugs))
First father's day without dh. One son put nice tribute to him on facebook and that started the tears. I've had a day of tears. I have shingles and the meds I'm taking make me unsteady so am not driving. Didn't see anyone yesterday and today son came by briefly to clean the pond filter. Very glad for him to do that for me When I get the lonelys I usually go someplace even if to just a drive through for a soft drink. Sometimes I think I won't be staying here at this house long because so many things I can no longer do. Just rambling thoughts on this lonely Sunday.
Flo, I was thinking of you today, of all our members who have lost their husbands. I know holidays that are meant to bring joy also trigger sadness for those who do not have their loved ones with them. I am sorry to hear you have the shingles, they are dreadful! Sorry too that you couldn't get out to help lift your loneliness. (((hugs))
I am sorry flo. When I am down, going to the coffee shop is a way to see people I know and at least see life in action. I am so glad I got the shingles vaccine. It isn't 100% effective but it is a start. It was expensive but worth it. I hope that you are feeling better today.