Welcome, ej. Good to have another man on board, although sorry about the reason. My wife and I married in 1954, but started dating seriously in 1945, while still in highschool. We never dated others seriously after that. She was diagnosed 5 years ago. Is still at home, but requires lots of care. I'm planning to look into hospice, etc.
All much appreciated by me, thank you all for caring.
Marsh....I found that during 4 yrs Irene was at home with AD , what with the incontinence et al it just got too much to handle. Today's visit (1 hr) always an emotional strain. How I would like to know just what memories remain. They say it won't be long now, but I wonder. She is safe and in an ideal setting, for which I am truly grateful. Try if your wife still walks, try to find a secure alzheimer's unit for women. She will make friends there and it will be a relief for you. Also there needs to be a safe outside area.
Despite being and doing well, I do have that long term sadness, well about 3 and half years now. As I am home alone, I often find it so hard to peel myself off the bed where I hide and watch movies, and to go out in the yard to smell flowers, pull weeds. I have such blessings really, cute little house, healthy body, comfortable finances for now, and my husband in a great care home. But the "ennui" gets to me. It is so true, you have to force yourself to just get up and go. I did that yesterday and spent 4 hours finally getting to the kitchen cupboard cleaning and such. Felt great.
more and more too I know that depression can come on with a chemical reaction, possibly brought on by tiredness and sad thoughts. It is like a cloud comes over and it is not something you choose, it just happens. The only way I can deal with it, is to hold on and know it will pass, to take vitamins and eat well, to get exercise, and of course prayer. However I know that some have deeper issues and medication can really help.
Today is a good day...I am off to town to visit my guy. The birds are chirping, the skies are clear and warm, and I managed to lose almost 5 pounds to fit in my skinny pants for this upcoming DC trip.
I set my IPhone to chime about 8 AM...on the weekend I get up when I darn well please. Before my husband died, 7 months ago, one of his doctors asked to see me when I happened to mention in an OBTW hat I started having migraines. He put me on Zoloft which not only clobbered the migraines, an amazing thing, but also got me to a place where I could cope. People tell me I look great ( I don't think so when I look in the mirror), less stressed etc. But underneath it all, there are still hurdles to overcome. The loneliness tied to being alone in the house especially at dinner time, his jokes etc...then there is the overwhelming business to cope with, taxes, and so much more. One thing the doctor suggested strongly was counseling which I have done and I still go, now about once a month but for a time it was every couple of weeks. Getting insight from someone else who is objective is helpful. And she has loads of books that have been comforting to read as well. I have not yet built up stamina or desire to go on any trips. The sorting of papers etc, and I have not even looked at the dressers and closet, has me not wanting to pack or unpack, It feels like a chore I don't need.
Mimi-Thank you for your words. It's been 3 months since DH passed but I am finding it hard to get anything done as well. Overwhelmed by papers, some related to my Mom who passed the year before. I am taking a short trip soon but I agree extra details are overwhelming at this point.
You've given me some ideas. Books being one. Any particularly good titles that you liked?
One book I am reading right now is called AfterLife Encounters by Dianne Arcangel. I have had several after life experiences of the olfactory and auditory type and most recently in dreams, very vivid dreams. These experiences are not nonsense and this book details many studies and reports of events experienced by people from all walks of life. There are others and the counselors office which she will loan me once I finish this one. And I go to a grief support group that is hosted by our church. It is led by a lic therapist. And we have a workbook that has some assignments, study and writing. It is not a big boohoo session though some are having a far harder time than others and some folks are back for a second time around. They have a lot to share just as we share things on this website. If you can, look into something like that. The thing for me is that after so many years of caregiving, I have become so far behind on things that I almost don't know where to start. I did rearrange my kitchen drawers making things more realistic for my new life style but I still have the dishes to sort out, thin out, and the pots and pans to deal with...then there is just the general sorting out of whatever is hiding in drawers, etc. It is just overwhelming to think about and I feel like I can't get on with things I would really enjoy doing until I get this done. I don't like coming back to a messy house and clutter and that is where I am at present. I am not a hoarder but you would think with the way things are all over right now that I am... I have started to ask myself, " If I had to move, would I want to have to deal with this_____?" I hope this tactic will help with the weeding and sorting.
Mimi* One thing I do is make a list. And even on days I feel like I can do nothing. I still do one thing. I wake up and say to myself, if I can only do one thing today, it will be…… And it does make you feel better at the end of the day. And make getting things done just a little easier. Don't try to do your kitchen all in one day. Just do a drawer a day or sort the frying pans one day (or week). And as time goes on you will pick up speed. Same with the paper work. I at times get so bogged down in the piles o papers. So I tell myself, by Friday I want all the piles sorted and put in order or away.
I do talk to myself a lot, have found the dogs and cats don't help around the house much, : )
blue* - I feel so much better reading that someone else talks to herself ;) --- I find myself carrying on a conversation usually telling myself to get with it and quit whining. My bugaboo is yard work and spring has sprung in Tenn. ( couldn't have said this a week ago) and the grass is green and growing. I never did anything outside. It was Frank's pride and joy and I was happy to let him enjoy the great outdoors. But it is mine now and hiring can be expensive and not always done so great. So I'm going to try to mow some and hire some. The yard is large plus two fields that have to be looked after. Flower beds galore!! He kept a really pretty yard. I have my sister's business to look after beside mine so I'm always behind. I think of moving to a condo but then I look at all this stuff and don't have a clue as how I'd get rid of all. No easy answers for this old lady. Think I'll just live here 'till I die and let the kids sort it out!!
Florence - often you can just pack up what you want and have an estate buyer come in and buy what is left. Maybe there is a youth group that would want to do a yard sale for you. Otherwise - think creative. As for the fields - let them go or maybe if there is grass on it, someone would want to stake out their goats, sheep or cows on it. Sheep can do a quick job on a field.
Florence, have you tried calling the local middle school or high school? I'm planning on doing that so I can find a youngster that I can train who will come a few times a week and do the manual labor I cannot do without the landscaper prices! Sure it won't be perfect but it will be a lot better than what I can manage.
For the past few months, I feel like I've been in a war against this sadness. I've been fighting it tooth and nail. Some days it beats me up, and some days I'm able to fight it back. But it really does feel like a war to me, because it is relentless. Winning one battle does not win the war against grief and loss.
Another element to the sadness, besides losing DH by inches right before my eyes, is that we recently lost our home. Now we are living in a much smaller place, and everything is disorganized and messy. I had two garage sales and carted things to charity (and to the trash), but there's still so much to do. Having a move on top of the normal caregiver things just about did me in, physically and mentally. Thankfully, DH did well with the move. But I miss my home, where I knew where everything was and didn't have boxes stacked everywhere. Being snowed in here for this, the coldest and snowiest winter on record for this area, didn't help any. But I'm slowly getting things done, and it's looking better. (My new best friend is the local furniture consignment shop. Not only can I get rid of things there, but I get paid for them, which helps.) But losing our "retirement" home was really a blow—on top of many, many other blows.
I can really identify with the idea of wearing a façade all the time. It would make other people uncomfortable, for example, if I started screaming or crying hysterically in the middle of the grocery store. And some days I feel like doing that. I don't know how we're supposed to deal with such long-term, ongoing grief. In a week we start our 12th year on this dementia journey. The first day we heard a doctor say "dementia" is one of those dates I'll never forget—no matter how hard I try.
I wish that caregivers could have grief support groups, but it seems like everyone but us thinks that the grief doesn't start until our spouses actually die. If they only knew. For 11 years I've lived with the knowledge that this disease would kill my husband, and I've watched it slowly destroy the person he used to be. Not only is it heartbreaking, but it's never-ending. The only possible outcome is that we lose our spouses. There's no "closure" because every single day brings something new to deal with. Like I said, it feels like fighting a war.
Sometimes the sadness turns to rage. My sister keeps complaining to me about how stressful her job is, and how she has months to go until she can retire. She keeps saying "can you believe I've been working here for seven years?" I want to scream at her, and say that I've been doing this for eleven years, and when it's over I don't get to retire, but instead of that, my husband will be dead. Is it really that hard for people to see what is happening to us? Is it the façade that fools them? What would they do if we sat them down and really, really told them what our lives are like? Probably we'd never hear from them again. Sometimes I think that would be better than having to sympathize with them and ignore what's happening to us. I'm getting really tired of wearing that façade.
Jan, you've been dealing with this war for a very long time - no wonder you are feeling sadness and rage. Something interesting happened this past weekend. I went back to the village-town I spent my teenage years in and met many people that I have known for a long time (I go back to visit 3-4 times a year). These are old friends: I knew their families, their history. It was a joyous occasion - a new church was being dedicated. At the social gathering after the dedication, I talked to many people, and it was good. But it wasn't until I talked to one old friend, A, whose husband is in the last stages of dementia, that I felt I was talking to someone real. Everyone else was pleasant and had social graces. In contrast, A was without play-acting, a human being, genuine, no facade, and she was the only one that I connected with honestly. With the rest, it was all surface, which made me appreciate someone like A all the more. Perhaps when we go on this heartbreaking trip into dementia land with someone we care about, it burns away any facade.
Jan, my experiences over the past 14 years have been so similar to yours, it's unbelievable. For me, it's a daughter who complains incessantly and is constantly demanding help with what seem to me to be fairly "do-able" issues. My other daughter (disabled and at the other end of the country) can't believe that the complaining daughter can't see what I am going through, or step up to the plate to offer me some support, instead of demanding it for herself. And we, too, lost our home, in a way--sold a beautiful, comfortable home in a place we loved to down-size and move to a cheaper state. It will be a good move in the long run, but between the AD, the big move, and finding out that close family doesn't "get it" at all, and is not there for us…it is truly a "war" as you said, that is taking a huge mental and physical toll on me. I don't know if I can survive or not, but this website is the only support I get, and it is invaluable. I am feeling like an idiot for believing family who wanted us to move closer so they could "help" us. Of course, it was all about me helping them. Part of what makes it so hard is that I have to put a good "spin" on it for the general public--don't want people to know how stupid I was…It was all about me being vulnerable and desperate because of the AD situation going on for so long. I just have to try somehow to hold onto my health and wait it out--set the firmest boundaries I can--and when DH dies (if he ever does…sigh), get myself more freedom--perhaps sell this nice little house at that time, to get away from the family whom, frankly, I feel have scammed me. Yes, that's how bitter I feel. But I have to hide it for now. As many have said…"the facade."
Such long-term sadness.... Yes, it's like grief is always lurking in my life. I am doing a pretty good job of dealing with all this and am so grateful that DH is actually doing well for right now but grief is my constant companion, always there - often sitting patiently in the background waiting to spring when I least expect it.
Last night he went off to the store (one block away and visible from our window). He had 3 things to get and refused a list. He phoned me 6 times from the store and did come home with the 3 things but lost his cane in the process.
I'm aware and make myself be thankful that he can still go out alone, can still use a cell phone, etc. but after the 5th phone call I was fighting back tears because of all the losses he has suffered. It is agony losing them inch by friggin' inch and knowing that the only outcome we can look forward to is their death. The amount, strength and relentlessness of this constant grief is mind-boggling.
Mary75* what an interesting concept! Yes, I can see this making a huge change in the type of people we want in our lives. Good loving caring ones. Reading about JanK 's sister really brings that same theme out in the open. For myself, as this journey moves on, I only hope that what I have learned, the compassionate part especially, stays with me.
all of you there is just too much to respond too. A million hugs all around.
I've been reading through this thread (is that what it's called?) about the sadness. It really jumped out at me, that's the overlying feeling I have much of the time. It's like a large hand is on the top of my head, pushing down harder & harder - it just doesn't give up. Weird, huh? It's sadness, interlaced with impatience & anger. I thought that I had the anger kicked, but it's still there, especially when D. does or says something that almost seems like he's purposely trying to get under my skin. Like when he mocks me - I almost want to slap him across the face (but I don't). Or he interrupts me before I even get a couple of words out of my mouth, with "WHAT? HUH? YOU'RE MUMBLING..." I just want him to shut up!!! He seems to be stuck in about stage 5, no major upsets for quite a while, but I keep waiting for the other shoe to drop - and dreading! On days like today, a good day, I feel somewhat positive (hey, the sun is shining & the sky is blue- what more could I ask!!). I've actually been motivated to catch up on all the laundry, folding it & putting it away, gave a spring cleaning to my bathroom (boy, it smells & looks so nice!) & am going to prepare a real meal, instead of something quick. Tomorrow, who knows. I have to adjust to my own moods & D's moods day by day (one day at a time!!) & try to take things as they come. Right now, I don't feel the weight of the big hand hovering over me, but by tonight, it could start pushing down again. Maybe one moment at a time would be more appropriate!
Forgot to add to my comment above- when I read about 14 years of caregiving, or 11 years, it just blows me away. I don't know how I'll ever make it if that's what could be in store for me. I realized today, after my housework frenzy, I just no longer have a lot of stamina. I poop out very easily & quickly, at least compared to the way it used to be. I was never a really high energy person, since childhood really, but now I have so much less. I suppose it's due to age, emotional ups & downs, some medical problems over the past year or so - it all takes it's toll. I just don't know where the energy & stamina are going to come from when I need them. Years & years of this? AAARRRRGGGHHHH!
Jan K--you asked about grief support groups for caregivers. I conduct a support group for the Alzheimer's Association and one of the main topics we are trained for is anticipatory grief. With a dementia diagnosis, grieving starts years before the person with dementia dies. We emphasize taking care of one's self, getting enough respite from caregiving, asking for psych drugs for the caregiver if necessary, etc. I know each support group's content varies, but grief should be universally included by all facilitators--it's a biggie. Have you ever tried a support group?
I SO hear you Mim. Prior to this disease, I used to be really high energy person and now struggle to simply walk daily. This disease takes huge tolls on us physically, mentally, emotionally, and spiritually. It is wonderful you can find some energy to clean and cook. I have come to the place of being compassionate with myself and saying over and over, "We (meaning all parts of me) are doing the best we can. The very best." I can't think about the years...when I do it is too frightening. I pause and ask myself, "Can I handle today?" Usually, I can handle today however that unfolds.
Mim, I can truly relate to your description of grief feeling like a large hand over your hand constantly pushing down. Actually since he is placed, I sometimes feel the hand pushing even more than when he was home. I can only take today. I simply get to distraught thinking of how many more years this could take. It has been about 8 years since I noticed symptoms and 6 years since his diagnosis. One reason I placed him was due to my constant anger and frustration. I knew it was not a good environment for me or him. I too was a high energy person having reared 5 kids and used to multitasking. But now if I can accomplish one thing in a day, it is a good day. Yesterday I swept the garage out and that was quite an accomplishment for me. They say once they are placed, one needs to "move on". My biggest fear is that I will not be able to "move on" completely until he passes.
CO2 - I've heard many times since being on "widowhood planet" (from another discussion) that I should "move on" make a new life. I sometimes what to whop the person up side the head - but I don't - only in my mind. I began grieving at first diagnosis and now 18 months after his death am still grieving. I have no interest in cleaning inside or outside. My son keeps telling me how much better I'd feel if I just got with the cleaning. So that big hand as you said, Mim, is still pushing on me. some days are bad and then there are worse ones. No one who hasn't lived this can begin to understand. So thankful for this forum.
If I do read my horoscope,I usually laugh. But one day it said I need to become more self-sufficient. That hit the nail on the head. I think I had been waiting for my children to offer to do more.Thoough I do know they have been waiting for me to give up and go to a retirement village connected to NH my DH is at.Well, this old girl isn't giving in until she's ready.We have a large country property. There will be a lot less flower beds,and I think I will only mow front and back yards. Side yards are on their own.I do have neighbors who will help but I hate depending on them for all the work. Besides,will give me some exercise.Time for me to get on instead of moping around.
yhouniey, Sounds as if you are getting a little zest back in your life and I say "You go Girl"! I also thought that my children would offer to do more but that didn't happen. With jobs elementary and high school and college age kids I guess their lives are just to busy to be be bothered by "old Grandma". I also have never liked to depend on others so if it gets done by me in one day or three it's okay. A little yard work and exercise will be good for the mind. I am happy to hear from my kind cyber friends that yes we can have some happiness after the DX of ALZ. Enjoy your yard mowing and your smaller flower beds and sit back and enjoy your accomplishments. Happy gardening!
Florence: I received grief counseling from Hospice after the loss of my DW. I too began grieving many years ago. My DW's mother had AD. Sue and I cared for her for her final two years. When Sue was Dx'ed we both knew full well what the future held. Grieving began years before the loss of her what I refer to as her loss of her soul; the knowledge and awareness of who anyone was and was only amplified slightly by her physical passing. I was numb with grief by that stage. Hospice counselors made their point very "loud and clear" ...You've been grieving for the last 6 years as your wife's sole caregiver, never taking a respite. Now you're 72 years old grab life and embrace it. You've done your penance, move on. I listened to their advise and here I am now 6 mos. after her passing in a relationship with a wonderful caring loving woman with a similar background of experiences. Our daily mantra seems to be one or the other of us saying "I never thought I'd be able to feel this way again."