I just had to say this "out loud" to someone who would understand.
I try very hard to be content with our situation. I think happiness is beyond me forever, but contentment seems possible if I work hard on it and nothing big pops up to deal with. But as we all know, living with this situation and hoping that nothing pops up is like living in a popcorn popper full of popcorn that's sitting over a high flame--and hoping that nothing pops.
One night recently I was watching a house show from the BBC online. I've watched dozens of shows from this series, and like that not only do I get to see the houses, but also the countryside, which is beautiful. But on the show that night, the couple looking for a house were both exactly my age. Their life is full of the excitement of their plans for their retirement years, including getting just the right house in just the right area, so they can pursue all their interests and spend quality time together. As I watched this couple, for a few minutes the hurt was so intense that I felt like I couldn't breathe. The contrast between this life and that life was just too severe.
DH was diagnosed when I was 52 and he was 54. It's now 12 years later, and I feel like I've aged 40 years. We've lost our home. Most of our family we never hear from. And interests? If I get to watch a show on the computer, it's a big day for me. For over 2 weeks this month, I never got out of the house. On a bad day--like today--it feels like the whole world got together and decided that DH and I weren't entitled to have dreams any more.
Right now I'm having some serious difficulty with the whole idea of contentment. Sometimes contentment seems mostly like just giving up--like just lowering your expectations so much that you don't get disappointed over and over and over... I don't know what the answer is to this. But as the years go by, I find myself wanting MORE--more than just trying to be content with whatever comes our way.
con·tent·ment noun: the state of being happy and satisfied : the state of being content
I am not in a state of being happy or satisfied. I just exist in this 'ground hog' world not of my choice.
At the chiropractor Friday he was praising me for taking care of my husband and the strength I have. Otherwise he was praising me for taking care of my husband and being happy. He sees me with a smile, laughing apparently happy. Truth be told I just exist. I try not to think of how my life is. I guess one could say I am in denial, taking it day by day. I am afraid to go there where the pain and loss is. I avoid reading a lot of the post about what our spouse is going through - the poems,etc. Ruth post a lot of things on Facebook but I avoid reading them. Yes - denial. If I ignore it maybe it will go away!!
It has been 7 years for me. It looks like he will go long like his dad (25 years) not quick like his sister (9 years) and that depresses me. I am loosing hope I will ever be out from under this disease. There is a part of me wishing I had not had the hysterectomy where the cancer was so it would take me from this. Then Jasmine brings some love or laughter. She has perked my hb up - has something to focus on.
NO I am not content. I am just existing trying not to feel. Hoping someday I will have a life without being someone else memory. Life sucks!
I was reading in an ebook that was recommended titled: A healing hug for Alzheimer's Caregivers. So far I have read two things that tic me off. The first is the writer tells the reader it is important for an early diagnosis so they can get on the medication that will slow progression. As far as I know, nothing slows it. The drugs he talks about allows them to stay cognitively functioning longer while the disease rages on. I have not read any studies that says it slows the disease down. The other is he says the caregiver has to keep their life outside of AD. Continue with activities they did before cause they need the break. Oh ya, how many of us are able to keep up our outside activities - clubs, gym, getting together with friends (if you have any), etc. ? None that I know of. Maybe I am being picky but if you are going to write a book being accurate and real.
No I am not happy nor am I satisfied with my life - I am not content.
I too, am not happy or content. I am also just existing. I have been dealing with this for over 7 years. I have said before I am 53, DH is 62. My world keeps getting smaller and smaller. I should have stopped taking DH out with me along time ago. I have to now. It is to hard. We see our grandson, who is 15 months old, every Wednesday. I do less for him than I have to for DH. Our grandson brings DH's shoes to him when it is time to leave. DH doesn't even know they are his shoes. I feel guilty, I want a life. Then I think, he doesn't have a life. But I have to do something soon. He is late stage 6. Yesterday, I was going to post "I am done". I am making an appointment today for an orthopedic doctor for me. I have had a pain down my right leg for a week now. I think it is sciatica. I am putting Iice pass on all day. DH will ask continuously "what is wrong with you". He doesn't remember of course.
Charlotte If one more person tells me of some miracle treatment or that the drugs slow it down, I will scream. Instead of telling me this, why not give me a break. One friend of DH's since he was 11 years old came by a month ago. He said I was praying and new I need to visit him. I will come by and give you breaks. Haven't seen or heard from him since. I am tired, lonely, mad, sad. Not happy or content. Sorry venting at same time.
And if the drugs DO slow it down some??? Just holds you captive in that world longer. Prolongs the enevitable. I hate books and articles that tell how much the caregiver "gained" from the years of caregiving. They obviously weren't deep in the trenches!
Jackiem29, Charlotte, Jan K, I so hear you all. I too am not content. Most day I am just going through the motions. I feel dead inside with a constant dread of what I will have to do next. It has been 6 years for me but noticed symptoms far before that so really more like 8 I guess. He has been placed for 16 months but I have to move him because the Alf tells me they can no longer meet his needs. I guess I knew it was coming but the stress of a move is almost overwhelming. I want so much to have a life but as my wise mother tells me (she will be 93) this is your life. I think to myself yes it is and right now I hate it. I feel weighted down by the disease and the unrelenting responsibilities. Yes it is better with him placed but as they say it is not over until the fat lady sings and she is not even on stage yet! Hospice tells me they do not know how anyone can lose that much executive function and still be walking and eating. I have no clue either. I had them take him off the memory medicine because I thought to myself what is the point? He has declined but so what. The medicine does not stop,the disease and only masks symptoms so what is the point? I went to a support group once and a gentleman wa ps there who had lost his wife and had kept her at home. He said to the group and I quote. My wife never needed all that medicine. That has stuck with me. Today I am visiting a long term care facility and praying that it will be fine. The last thing I want to do in the middle of winter is visit tons of places.. Hospice said they would help me so that is good. Several of the men in the unit who were moved subsequently passes soon after the move so I guess ther is hope. Only people who have gone through this can understand our desire to have it end. God bless you all. We will get through this together.
Words for the opposite of contentment: sadness, misery, anguish, distress.
Jan K - You raise a very good point. Twelve years is such a long time to be living in this hell and the thought of never being happy or content is very scary.
Charlotte - I feel badly that you sometimes wish you had not had the hysterectomy. I understand how you feel. I understand how everyone feels because I am living this hell too.
Jackiem29, AuntB and CO2 - How can anyone of us be content? The overwhelming pressure and effort to find a new facility takes my breath away for you. Jackim29 - sciatica is very, very painful as you well know. I hope you can find some relief soon.
My husband has declined so much in the past few days. I am scared. He is scared. My 11 and 12 year old boys are scared. Content? Exactly the opposite.
I think all you can do is try to make the most of the moments, and also try to make the most of your life within the limitations. In the fourteen years of Alzheimers caregiving, I experienced the same feelings, the same losses, the same struggles that everyone is talking about upthread. I'm sure you all remember my anguished postings. Sometimes the highlight of my day was a hot cup of fresh coffee on the screened porch early in the morning, or seeing three deer in the yard on a quiet evening. Yeah, right, big deal. I tried to keep up with some writing and music, but can see now that I was so crippled with fatigue and depression that I certainly didn't get very far. I moved out of state to get help with DH, and as most of you know, jumped out of the frying pan and into the fire. I don't have any good answers…Alzheimers destroys the person, but also destroys (or tries to) the loving caregivers of that person. I think during the years of caregiver hell you have to just find small ways to hold on to happiness and fulfillment…maybe for Joan it is knitting a scarf, for Charlotte it is petting the dog, for me sometimes it was writing a book review for Historical Novels Review, even though I couldn't complete my own book manuscript. I never missed leaving the nursing workforce…because I didn't really leave nursing…ha,ha. Caring for DH all those years has cured me of any wish to go back to a nursing job, trust me on that. So I think we just have to support each other…throw each other lifelines, tie those knots on the end, and hang on. Nobody else understands how evil Alzheimers is, or how it damages us. We just need to take tiny steps for happiness…little slivers of joy and fulfillment, since we're not going to get it in big slabs…and just hold on…one day at a time…one foot in front of the other…with all of us sticking together. Yes, we will get through it together.
Oh this thread could not have come at a better time for me. Thank you. I agree with everyone and am also simply existing. It feels terrible. I try to do more but lack the energy or stamina. I especially agree with comments about books and what rich insights caregivers get from this disease. Really? Not my reality. And sigh about medications and early diagnosis. So often I feel completely out in left field. So many people tell me how important it is to get on with my life. We have discussed that here too. What the heck does that mean? We are all trying our very best and thankfully I can turn to you all and know I am not going mad.
I never felt any contentment throughout the whole nightmare - sadness and resentment prevailed for me. After trying to deny that the disease even existed for several years, I finally did partially accept the inevitable. So, maybe "accepting" defined me in the later years. Learning to deal with the hand that was dealt us actually made things a little easier. But, I too simply existed every day - Charlotte's description of feeling as if you are trapped in the "Groundhog Day" syndrome is perfect. Even now, more than two years after my husband's death, I still feel like I am just existing. As others have said on here before, I think this long term caregiving changes who you once were. Maybe I'm not fighting hard enough to get that old me back again. At least now, I do feel some PEACE and I am grateful for that.
Charlotte, I am glad you had the surgery - enjoy your puppy and whatever other small things that warm your heart. Nothing is written in stone. No one knows what lies ahead. We have seen many examples on here just how quickly things change.
As for many of the books and movies I have read/watched on the subject, none really describe the truth as we know it. Maybe if they did, no one would want to read or watch them. Personally, I think that is why Joan's site is so valuable. Coming here was a real eye-opener for me. All here helped me to understand what was coming my way and helped me with solutions to handle the many situations.
As Elizabeth said above, "just hold on...we will get through it together."
Oh, Christine, My heart breaks for all of you, especially for your boys. I know you must be trying to put up brave front for them and for your husband, but that is so hard to do.
P.S. From what you have posted, you are located right in center of the blizzard that will arrive tonight. I will be thinking of you in the next few days. Stay safe.
Christine I could not imagine going through this wit such young children. It is hard enough to see my adult daughters deal with this too. My heart also goes out to you.
If they don't cancel tomorrow I will go to a local Alzheimer's support meeting. I am finally going to try to find out what is available in the area since my talk with the VA social worker led no where. He said to contact the department of aging. The VA in this area, although still part of the Portland VA system, is not as good. I still have to drive to Portland for his neurologist which is 5 hours away.
My problem seems to be my husband was diagnosed earlier than most. The thing that got it going was I got tired of repeating - I called it selective hearing like with kids. He is not as far as many here and that is depressing cause it means even longer before placement and/or the end of this nightmare I feel trapped in.
I told the chiropractor I make it through by an occasional pity party with the Lord, then move on taking it one day at a time.
This thread captures exactly what I have been feeling. I don't know if I can express it but today I felt like I am 48 years old in side; like my life has been on stand still for the last 12 years. I am 60 years old and my DH is 61. I can't believe it. Twelve years ago I backpacked 100 miles with friends and one week later Chuck was diagnosed with Alzheimer's, lost his job and had to go onto disability. I am now thirty pounds heavier, tired and stressed a lot of the time. I remember coming to this website years ago and really could not comprehend the toll caregiving would take on me.
Right now I am probably closer to being content than most of you are but I think my long-term prospects for happiness are worse. In other words, I’m temporarily content within a life of permanent misery.
When my husband was diagnosed 7½ years ago, I fell apart. I eventually pulled myself together, but as with Lizbeth, the years of caregiving took a toll on me, both physically and emotionally. Now that he’s in LTC, I’m better but I feel like an old woman. I visit my husband almost every day, not out of duty but because I miss him so much. I’m drawn to him like a moth to a flame. He is getting excellent care and is generally happy and I am so grateful for that.
The odd thing is that unlike many of you, I do not look forward to my own life - what Joan wrote about in her blogs of September 2nd and January 20th, and what Wolf and others have talked about in their comments. I’m not even sure I want to continue living after my husband dies. It’s not that I’m afraid of life as a single person. I was single until I was forty and I had a good life with many friends and adventures. But he is my whole life now and I really don't want to focus on life without him. And the thought of another romantic relationship turns me off. I just don’t have any interest in the subject of a new life.
Like you I am not interested in living after Kevan is gone. I just want to be with him. I mis him terribly and I know he is being well cared for and he is a handful for them but if I could I would go everyday but he wants to be involved with the activities and so I just go every few days. I find that very hard but I do have to let him get involved there. I am not interested in getting involved outside of his world and i know maybe I am not trying but I just want him back.I am not interested in any other man just him. He is my love!!!!
Myrtle and Jazzy, I feel and felt just like you do. Life is not really worth it without Larry, but I am groping through this fog, trying to figure out who I am and what I want to do with the rest of my life that is meaningful and authentic…not just trying to fill the time. I think it is a gradual process, and sometimes the grief mist clears a little, and I can see some glimmerings of how the rest of my life could be fun. I am finding that getting a little--at least 30"--of fresh air and exercise outside every day seems to help. It also helps to boot myself off the computer and do "real" things--like walking, reading books, or playing music. I absolutely force myself to go to bed at a decent hour, get up at a decent hour, and put on just a little make-up and earrings. (About the most I can manage--I really don't care--but try to.) When I wake up, I open my piano and play "Morning Has Broken" before I even have coffee. I take the cover off my harp, and play one song that I have memorized before I even tune the thing. So I start with music--not much, but just a little--and if the harp isn't in perfect tune, well…I'm the only one hearing it. These are pathetic baby steps, but at least I feel like I'm trying to carve a life for myself. I'm embarrassed to say that after five months without him, I am still quite capable of spending the day online cruising the Internet in my nightgown without even brushing my teeth. You have no idea how hard I try not to do that. I think about him morning, noon, and night--talk to his pictures--stroke his Bible--sit on the side of the bed and look at the place next to it where he died in the hospital bed. I cannot understand how some people fall in love again and get re-married. Bleahhh. I couldn't even imagine being with anyone but him.
But let me tell you about my mother. She and my dad were happily married for 50 years when a brain tumor hit him in 1996 and killed him in three months. She also did not want to live--spent ten years alone--never dated. Then she and my widower uncle (an in-law, no blood relation to her--my aunt was my father's sister and died of cancer) fell madly in love, got married, and had the happiest of eight years together until Mother died, as you all know, last January, at home, with him by her side. She was 79 when she re-married--he was 81--and they were one of the loveliest, happiest couples I've ever seen in my life. So it is never too late for a happy marriage and a happy family life. Not an Alzheimers situation, of course, but I'm just saying.
Bleahh. Well put, elizabeth! But I suppose what happened to your mother shows that anyone of us can be happily surprised by a gift we did not wish for. My own mother lived for 24 years after my father died of Alzheimer's. She did not remarry but had an intellectually active life, researching and writing until her death this summer at the age of 98. She had an unstoppable will to live, as did her own mother. I did not inherit their zeal for life. In fact, my mother’s energy exhausted me.
I’m not as sad as I am tired. I think my problem is that I've been so ground down by years of caregiving and by thinking of little besides aging, disease, and death that I don’t have much positive energy left. Right now, I'm content to take my husband to the musical performances and bingo games that his facility offers or to take him for rides if weather permits. (As I said, this is the "contentment" part of my life.) But after this is over, I'll probably just want to lie down and sleep. Maybe I’d feel differently if I had children or grandchildren.
I know I should get some exercise outdoors in the natural light. Although I’m lazy about that, I do have a small project. I agreed to feed my neighbor's two kittens when she goes to Florida for a week in February. Since our driveways are separated by a 20' strip of snow-covered grass, I would have to walk (or drive) down my icy driveway and up her icy driveway several times a day. So a week ago, I shoveled a path between the driveways. Maintaining this 3' x 20' “cat path” has been a challenge, especially since the guys who plow the driveways keep dumping snow both ends of the path. I reopened the path today, though. Our mailman is very pleased and my neighbor just called and told me she is going to help me keep it clear. She is a widow in her seventies and has been having cabin fever so she is excited that we will be able to visit each other easily, even in bad weather.
Jazzy, hang in there! Your new support group sounds like a good one. I’m looking forward to hearing about what you will plant in your patio garden. How long is the growing season in Ontario, anyway? About 60 days? HAHAHA! (I know, I know, since I’m in New England, I’m hardly in a position to kid anyone about that!)
New England. New York. New Hampshire. Weren't the English inventive. What is Newark then? New Ark? Even Toronto was first called York but apparently the English got confused and had to change it to Toronto which means 'conference center' in either Algonquin or Mohawk I think. 'Meeting place' I mean. But they really outdid themselves in New York, New York where if not for Sinatra - it would still sound stupid.
I just looked up "Newark" for you. It was settled by some Puritans, and they named it New Ark…for "New Ark of the Covenant", and the name contracted into Newark. Interesting.
Just an update--I am trying to memorize "Oh Canada" in both French and English in case I ever need it. (Also, Celine Dion sings a version that combines both languages.) It is a nice song--much easier to sing than "The Star Spangled Banner".
Elizabeth, I took too long writing this and had to paste so I can see your post 9 minutes after being written. I did not know that about Newark. Just making a play on words. Here's the post to you.
Elizabeth, it's five months. Allow the grieving to take place. Suffer the pain of his loss in truth as you are doing and I feel certain you will come through what this feels like.
My experience is different. I entered my fourth year living alone a few days ago and my fifth year of not having a single superficial conversation with Dianne. There is no doubt IMO that what I'm going through is different largely because of that fact plus that we had no children. I have no continuity of what was where my sister got upset when I talked about it and my in-laws are a bunch of troglodytes. I have only the choice of reinventing myself.
My experience has evolved the entire time alone. I would compare it with winter turning into summer. Each day brings it's own things but there's no doubting what's happening overall.
For example I had a serious anxiety crisis about a month ago largely I think because we went into palliative care and I had to arrange her funeral. If I'd had that in the first year or even the second I believe it would have been very hard on me. It's one thing to have a crisis and realize it - it's another to be so far in a hole I'm numb to it.
As a result of it I came to understand much of my coping mechanism was centered around the computer on which I have lived for years now. I looked for my life on it (I don't think there's anything wrong with using this rich lifeline) and really should have carpal tunnel syndrome. I used it when I was a caregiver because I could both be here and not be here or at least get away a bit. Nothing changed when I was alone except I was on it all day every day. I had no other life except miserable pain and seeing to Dianne.
When the computer broke and the backup computer didn't work either - I had that crisis. Even though I knew it was because of the other things and I really was overcome with anxiety - I turned it off. I got the backup working but I use it to check things a couple of times a day and I now spend my time actually in my life rather than sleep walking through it until I get back to the PC.
I've spent more real time in my real world this last month than ever. And I swear to you as a fellow traveller, that it's good. I had resolved some earlier conflicts but spending week after week (it's actually been six weeks about) in the 'now' has transformed my outlook by proving to me that, to be honest, I feel comfortable in my skin and I feel strong and confident.
Dianne was the calm in our relationship. I'm not looking for contentment. Life isn't suddenly a bed of roses; but, having given up sitting in my escape tunnel - I can see and feel that I've got more things on offer than challenges. The big empty was actually the Alzheimer's period which is ending for both of us.
Hang in there. Appreciation will forge things in time. One of my best tactics was to expect nothing and simply do the work. Whenever I found myself thinking I'm not feeling any better the answer was always to stop being an idiot and help carry.
The best overall advise is to forget strategy. This is completely a tactical war. Almost nothing I did and didn't do can be tracked linearly because I've been looking for such a cause/effect. Instead it feels more like throwing stones into a pond and if you expect anything it takes forever; but, if you keep doing it - you hardly notice when you walk across the stone garden.
I would guess that all here only took marriage vows of "for better or worse (some have had more worse than better)" but I doubt any of us took vows "to die with you". Those with survival skills will make it through this Journey to Hell. I tell myself every morning "not my circus - not my monkey". It definitely allows me to keep a sense of self and purpose.
This is turning out to be a good thread. I have some thoughts on the above posts, so I'll just list them in no particular order: I wonder if Myrtle's "tiredness" could be a warning sign of depression, as well as being bona fide fatigue because of the caregiver demands. I have a huge problem with not letting myself succumb to "the blahs", and with just feeling apathetic, lethargic, and tired for no reason sometimes. It seems to go with the territory of being an Alzheimers spouse. It is part of all the other issues that drag us down. (Not sure I'm explaining this well…don't mean to sound whiny or negative.)
In terms of children/grandchildren, I would say it's a mixed bag. It depends on what kind of family you have. For me, I am still reeling and trying to adjust to realizing that the relationship with my daughter and three grandchildren is not going to be what I had hoped for and expected when I moved out-of-state to live closer to them, and be more involved with them. I suppose I love them and all that, but the culture and values in their household is uncomfortable for me. I'm not judging…DD can do as she wishes, of course. I'm just saying. And I will be out of here and back to my own home place and autonomous life in 17 months. (Yes, I'm counting. It's going to be a long 17 months.)
I attended the grief support group at our church, and I guess I'll go back, although it was…meh. There were not any Alzheimers people there, and they mostly just went on and on about religion…but I'll attend for long enough to give it a fair shot. To quit after one time wouldn't really be fair to their program.
It probably is comparing apples and oranges to compare being an AD widow or widower to still having a live spouse who is in a facility. I'm not sure I have much to contribute to what it's like having the spouse placed, except that I think we do all deal with similar issues of isolation, loneliness, and depression. And I do remember the fatigue and sense of being fragmented when Larry was in the hospital and Rehab. before he came home with Hospice. It was like I never could relax, because the care in the Rehab was so sub-standard, and I was always running back and forth, and being worried all the time.
Wolf, like you, I find the computer is a godsend. I think we have to use it judiciously though, and at least in my case, I have to limit my own screen time just like parents have to limit their children's screen time. It can be hopelessly addictive. Do I really have to spend hours looking at three U.S. newspapers, two overseas newspapers, and going back to Florida Eagle Cam time and time again to look for the birds? You are right that it is a good escape tunnel though. In terms of strategy versus tactics, I had to look that up. As best as I understand it, strategy is what we are trying to accomplish…the goal. And tactics is how we are going to accomplish our goal. So you are saying not to formulate a concrete goal, but just take it one day at a time, doing small, positive steps daily…and things should turn out well in the end? Sounds like a plan.
InJail, thanks for your support and that last priceless comment that in our marriage vows we did not promise, "to die with you." I can't analyze it too closely, but that thought is resonating with me big time. I am thinking about that a lot. That he is dead, but I don't have to be. That it's OK to still be alive. Hmmmmm.
I hope my comment gives you more strength to move on Elizabeth.
I was proud of how I handled things today (more of my thought process of "not my circus - not my monkey". Mr. Hostile has been on the warpath off and on about a tree next to our property line but actually in the County's ROW. He has had no luck getting the County to remove a huge tree tangled in the utility lines, leaning toward the road and over half of the roots exposed from erosion on a hillside. He announced this morning he was going to tie a rope on the tree and pull it over onto the road with his truck. I told him that was a very bad idea but that I was ordering a pizza tonight and would eat his share when he was either in the hospital or morgue crushed from the tree or in jail when the Sheriff shows up.
I should have also told him that I will really feel bad when that beautiful, very expensive truck is destroyed since I was looking forward to ending up with it. That might have been pushing my luck so just as well I didn't add that into the conversation.
Hi InJail, I completely agree with you that none of us took a vow 'to die with you." If I do not survive my husband for very long, it will not be because of a vow; it will be because I just ran out of steam. I also agree that those with survival skills will make it though this hell.
However, I would be lying to myself -- and it would not be a very convincing lie -- if I said that this situation is "not my circus - not my monkey." I was not familiar with that saying so I looked that up and see it is a Polish expression that means "not my problem." My husband's illness IS most definitely my problem, my circus, and my monkey. The only question is whether I am the monkey, the ringmaster, or the trapeze artist. (If don't start losing some of the weight I gained in the last few years, I might also be mistaken for the elephant.)
I realize that your relationship with your husband is very different from the relationships that many people on this site have with their spouses, although you certainly are not alone. Many members have had unhappy marriages and some even have spouses who are just plain nasty. Somehow, I think that taking care of such a person would be worse. On the other hand, I can see that it would make the circus analogy more convincing. It sounds like you have a lot of survival skills and that you have figured out how to limit the damage your husband does. Assuming you can stay out of his line of fire (and I mean that literally), I am sure you will survive.
Yes, I agree that if you had a happy marriage in the past, it would be pretty hard to say "not my problem." If the marriage was not happy, and the spouse is basically just there because of responsibility issues--not abandoning the person just because they're demented--then I think it would be a lot easier to detach mentally and emotionally.
I just jumped back online for this quick moment to say that I hauled out the old "Happily Ever After" wall sign that we used to have up in our old house. I didn't put it up here, because it just seemed so tactless and idiotic with Larry declining and dying. But you know what? After InJail pointed out that we didn't vow "to die with you" I thought…what the hey…"Happily Ever After" doesn't necessarily have to refer to the couple's future together. Why can't it refer to my future as an individual? So I got out the sign, dusted it off, and hung it up. So…I'm not totally there, needless to say, but when I look at that sign up above my kitchen sink, it does put me in a…sort of…kind of…better frame of mind. Thanks again, InJail.
I can't even imagine joining this "circus" with someone who you really didn't even like/love. I take my hat off to those of you who are doing this everyday.
Wolf, I've learned today that I'm quite parochial when it comes to language. I had to go to Wiki sites twice today, once to look up what turned out to be a Polish expression and again to look up the meaning of the word "hoser." Isn't that a little over the top?
The word "hoser" was often used in a Canadian television show on SCTV. It was a comedy show and I found it unappetizing. Also in Canadian hockey circles. I agree that it was "over the top". I have really found your input very helpful. Please don't walk away because of this. This Canadian needs your help!!
Names - I agree Wolf that often they make no sense. There are others like Kansas City, Kansas, Oklahoma City OK, worst by far is Washington DC and Washington state. I hate having to always clarify which Washington. I think they should drop Washington and just call it all DC.
.....To Jan K and all, .....Since you started this contentment topic three days ago, I've been following the comments and thinking about contentment. Everyone here seems to agree that contentment means satisfaction. .....Of course, since my journey through this was so much easier than most of you, I can only speak for myself and what I went through, but I think that even during the worst times, I was always content. I got a lot of help from all of you on this site, and was grateful that my situation was not as bad as others here. I was actually proud of myself for the way I was handling each difficult challenge. .....We cannot control what life throws at us, but we can control our attitude. Now I've had a lot to say about attitude in other posts so I won't get on my soap-box about that, but I do think that each of us should give ourselves a big pat on the back for caring enough to be a caregiver. ..... Contentment is really not happiness, but if we are happy to be content, Then we ARE happy.........Doesn't this make sense?
The entire post was miles over the top which was the joke in responding to the joke you made. I've kibbitzed like this for years. I added the water thing to be clear it was all jest back.
It's originally a hockey term. The side that lost had to hose the outdoor rink down so the ice would be smooth again the next day. It's not common usage and the MacKenzie brothers picked up on it as part of their Canadian theme which did extend into the USA back in the 1970's.
It's most common slang is 'losers' (of the hockey game). Hosing the rink down with the garden hose is cold work nobody wants to do. And Quebec did send down 75 snow ploughs a few days ago but Canada and the USA do that all the time for each other. We swap hydro crews too.
The basis was the weather between the USA and Canada where the hoser comment made fun of New England needing our snow ploughs in retort to our short growing season up here. All of it was in fun which is how I took the original comment. I'm sorry it struck you personally. I've never insulted anyone here and I've been supportive of you all the way through. I thought that would be clear. I don't know what else to say.
Hi Wolf, No apology needed. You didn't insult me. Believe me, I appreciate the support you have given me since I joined this site. I consider you a friend.
When I read your post I took it the way you meant it, as a joke. However, out of curiosity I made the mistake of looking up the word "hoser" (as I had done with the circus and monkey thing) and started to wonder if YOU had been offended by my joke. I am tone deaf about popular culture and I rarely watch sitcoms so a lot of things go by me. I think this may be one of those words that needs spoken context and tone of voice when it's used in conversation with dopes like me. Anyhow, I'm not insulted. (And please don't think I'm a neophyte when it comes to strong language. For most of my working life, I had male colleagues who gave me regular vocabulary lessons and then I married a man who had spent 20 years in the USAF and who completed my education.)
As for Canada, my husband's background is French Canadian, although he does not remember that now. I always say that if I could live anywhere, it would be Montreal and for years now, I have kept 3 loonies in a dish on my bedside table to remind me of our honeymoon in Nova Scotia. The only other province I have visited is Manitoba -- a dear friend lived in Winnipeg -- but it left me cold. HAHAHA! (What is WRONG with me? I just cannot resist!)
Hi Jazzy, Don't worry, I would never walk away from this site; it's my lifeline. However, others may want to walk away from me because I just cannot resist making these stupid jokes.
A little earlier, I got back from a support group at our Senior Center, where a discussion brought up the issue of contentment. I'll report on here it later tonight or in the morning. Right now I'm going to put my feet up and watch some TV.
Excellent, because I am. I will never break bond. If I look like I am call me on it. I could have done that differently but the whole point of my reply was to pretend to be offended which is why I called you buttercup or honeybun - whichever it was. And which is why I threw in the most obscure insult I could think of - which ended up causing a ruckus.
One of my favourite late night personalities calls us "beaver sucking ice holes". He's from North Carolina. I come from the same place that produced Mike Meyers and Jim Carrey and Dan Ackroyd. One of my favourite pieces was about the war between Denmark and Canada. It's not offical but we fight over Hans Island way up north between Greenland and Canada. We zoom in on an inflatable and pull their flag down and put ours up and they do the same. I wrote a piece in the economist contrasting a serious border conflict with this nonsense between Canada and Denmark. I said it was full of herring tales of bravery and not showing fear beaver the enemy. I greatly offended some Danes where the Economist is an international rag but it got good reviews. In some ways I'm a freedom fighter for some small rock in the middle of nowhere.
Besides, most of my relatives are americans and my father worked for the US State Department after the war. He chauffered Mamie Eisenhower around once. They gave him the opportunity to immigrate to the USA but he chose Canada because they didn't have a draft. He was the first to come up here. I also have family in Missouri and Indiana who were war brides of American GI's. Add California, Michigan, Illiniois, and New York where I have relatives in all those states, that I lived in the USA for over two years total, and that I've worked in most major American cities during a ten year stretch - and you understand more of my background with North America.
I've been following this, wanted to say something a few days ago, but couldn't come up with anything. I'm still not sure I can. As I read the comments, I think there must be something wrong with me. The wonderful ways some speak of the love of their spouse makes me a little confused - why can't/don't I feel that way? My marriage hasn't been horrible, although very disappointing in several ways. When we married, I was marrying the love of my life. Haven't felt that way for several years, but I do what needs to be done. Have I become so hardened by disappointment? Will it turn out to be in my own best interest throughout this mess? I could never abandon him, but I look forward ( not sure that's the right word to use) to possibly having a couple of years to myself, to be responsible for nobody but me. Even I think that sounds hard-hearted!
I think for me contentment comes from the acceptance of what is. I've always been kind of a realist, also have been told that I'm very resilient. Sort of like the inflatable clown my kids had when they were little.Weighted in the bottom, could knock it over, but it always bounced back. (BTW, I think I'm becoming weighted in the bottom!!!) Maybe it's just being able to roll with the punches - not always easy, sometimes takes a while to get myself right again.
InJail, I love that idea that we never promised to die with each other. Very good thought.
Mim, you are being too hard on yourself. To look forward to having some time to yourself and not to be responsible for anybody else is not hard-hearted in the least. It is very natural, and why shouldn't you have that? You are a valuable person with much to offer--I know that from reading your posts on this website. There is nothing wrong with you. You really said it all when you said, simply, " I do what needs to be done." You are there for him, day in and day out…as you said…resiliently and with a grounded, realistic attitude.
I think your comment that our wedding vows did not say " I promise to die with you" has touched me. I will remember that, whenever the demon guilt comes over me.
We are all entitled to peace, contentment and happiness. My husband always reminded me to take care of myself long before AD destroyed him and our life together.
Mim - when you think many of us raised kids so they came before us; we were there supporting our husband's so they came before us; now with this disease they come first more than ever. We are due to be first even if it means alone. I know I am tired of always someone else's welfare and happiness coming before mine.
Like you I have a wall built up for some protection - easy to do since it was a necessity for childhood survival and all through my adult life. We have moved alot our married left leaving 'friends' behind, never really getting too close to people. Putting up a wall of sorts has made moving easier but it also has made it hard to attach to my grandkids. I love them but for the most part not seeing them does not bother me. Is a weird way to feel.
Mim I feel the same way. I am looking forward to some time to my self. Raising two girls and two step children and my husband, it is time for me to put me first. I just need to try and remember what I wanted at this point in time of my life. It's been so long that I don't remember or have the energy to put towards that. Hugs to all
At a support group last night, after I talked about how my husband was doing and explained some of the things that I did with him at the LTC facility, one of the members said with apparent amazement, “You’re happy!” I had to admit that I was. So to clarify what I posted earlier, overall, I’m miserable. But when I’m with my husband and when I talk about him I’m happy. This is because he's happy and I trust the people who take care of him. Of course, I won’t feel this way when his condition deteriorates or if I no longer think he’s getting good care.
I’ve noticed that when family members or friends ask me how he's doing, many of them look worried or even embarrassed when I smile and prattle on about his antics or about the things we do at the LTC facility. Many people say, “You know, you don’t have to visit him every day.” When I say that I go there because I want to be with him, I don’t think they believe me. I know some of them think my focus on my husband and his situation isn't healthy. They think I should be “moving on” and “getting a new life.” They may be right - it does seem foolhardy to base one’s mood on the peace of mind of a person with a degenerative brain disease. And maybe a few years out, I'll be interested in turning the page. But for now, what am I supposed to do? Answer peoples’ questions by solemnly saying, “He’s doing as well as can be expected”? Pretend that I want to “move on” or "get a new life"? Turn my back on these little windows of happiness?
Recently I've been thinking about how people don't quite "get" that many of us really do want to spend time with our spouses and be involved in their care. Would we get the same attitude from people if our spouses were dying of cancer? Would they still encourage us to spend less time with them and to "get on with our lives"? I don't think so. It's another sign that this terrible disease is very different from other diseases.
Thank you Jan K you just gave me my new answer to both those comments. I would never leave him for long if he were dying of cancer and I just can't now. This disease is different and we are living it.
I should also clarify that I do not intend my comments as a criticism of those who do want to start a new life or even a new relationship while their spouses are in LTC. This disease can last a long time and often consumes what remaining years and chances for happiness the well spouse has left. What's more, many afflicted people spend years not even knowing who they are, much less who their spouses are.
I'm just saying that for as long as it makes me happy to be with my husband and to be part of his world, I am going to do that. And I'm not going to let the possibility of a getting a new life make me forego the happiness I feel being with him right now.
Last night we went to a musical performance at the veterans' home. This 2-person group has a repertoire of popular, folk, country, and soft rock music. The vocalist interacts a lot with the audience and gives out small hand instruments - maracas, tambourines, etc., so they can participate. We sat at a table near the front. My husband shyly avoided meeting the vocalist’s eye and did not know any words, although he tapped on the table to the rhythms of the songs. But when she started to sing the Air Force Song, he actually sang the words (“Off we go, into the wild blue yonder . . . “) and gave her a big wave. She came over and they exchanged high fives and sang together for a few minutes. When the song was over, he turned to me, straightened up, and said, “Now tell me I don’t know that!” We both returned to his care unit in great moods. Of course, he forgot about the whole thing a few minutes later. I teared up a little on the way home but all-in-all it was a good time.
- - - - - - - - - - - - - - -
What I have written above is an example of what most of my friends and family do not want to hear from me. If I told them this story, there would be silence, a worried look, and then maybe a question, “Have you thought anymore about going South for a long weekend?” or “When are you and X getting together for lunch, again?” or "Have you gotten any interesting work in lately?"
This was what I was trying to convey in my earlier posts - that people who care about me think I'm throwing my life away, or at the very least, that my priorities are misplaced.
I believe that what we do with what's left of this life is up to us. I'm not interested in a new person in mine but for others, well that's their choice and not for me to judge. If they are happy that is all that matters.
Myrtle Your story about you evening was lovely. I'm so glad to hear that you both enjoyed your evening. Music is so good for all if us but especially for our loved ones. Music seems to sooth them. Kevan loves to listen to the cd's that are in the lobby and the receptionists miss him coming to play them when he misses a day. Kevan came to visit today and changed a light bulb and is out shovelling the patio. He is afraid of it melting and running into the basement. He says he needs the exercise. I just let him putter around at what ever he can do. I haven't had to re do anything yet.
Myrtle, that is a nice story. I guess I would have it must have been nice to have shared that moment with him even though you are the only one to remember it.
I don't believe this entire "moving on with your life" (for lack of a better phrase) is an either/or thing. Last night I had a nice time attending a geek gaming event for the first time. No talk of dementia for an entire evening (probably a first for me). And this morning I visited my wife (around 1hr 15min drive) and brought her cat for the visit.