Ok, I don't need to be "corrected" or have any of you who are there tell me how it's worse, or how you'd give anything for another day, etc. Well, say that if you want to, but I'm not completely naive as to what's coming...
But this is the confession: Every time a member reveals that his/her spouse has entered the hospice stage I have a whiff of a thought that I wish it were me.
I completely understand myself though. I do feel, to an extent, "in jail" from a relationship standpoint. I mean, I'm maintaining a pretty good life, which does really have many positive aspects, but day after day, year after year of full-on commitment to a non-reciprocal relationship is just wearing. I just want to be on my own. Often. And my spouse is in (apart from AD) excellent health. And is young. (62) And has never progressed quickly even though this has been going on for 6+ years. But this is a drag. That's all.
Of course, I will say--in the interest of balance, and to demonstrate that I am not entirely monstrous--that if I had a genie, I would, no question, wish to have my old husband back. That would be the number 1 wish. But, since there is no genie hanging around I can't turn things that direction.
Emily - there is nothing wrong with what you feel. I am hoping the end for my husband comes quickly. Watching him deteriorate as he as so he no longer talks, and now no longer really is able to interact with me is heartbreaking. How he is now is not the life he wanted. My whole life has changed due to this disease and all I have gone through because of and for him. I know we are in our 8th year of his being affected if not longer (he was diagnosed 5 years ago). It has been over 5 years since I had a "normal" life.
At 52, I want to live again, move on with my life and find out what is out there. I want to find a partner to share my life with at some point in the future. All of this is on hold until he goes. While I am not actively looking for someone - I don't feel it is fair to thrust my current life on someone, if someone should become part of my life that would be okay too. At this point I am trusing a higher being than me that my life will work out as it should and that the diety will take care of my husband for what is right and best for him too.
I haven't reached that stage yet with my husband as far as wishing he was going into the hospice stage, but I do understand your feeling of feeling like you're in jail. Waking up every day knowing it's going to be the same thing day after day, wishing there was something to look forward to. We always did things together, with me planning our weekend and vacation trips, going to the movies, out to dinner with friends. But, no the days all run into each other. I don't understand at all my "new" spouse, he's completely different from the "other one." Thank God, we didn't go through this earlier in life like some of you.
It's his kids and ex-wife I look forward to escaping from. Harassment continues, and I'm in touch with lawyer to put a stop to it, but it is the worst thing about this disease, the problems they cause both my husband and me.
Emily,don't be ashamed of your feleings,sometimes I feel like that too.My husband traveled in his work and retirement almost made me have a breakdown,I was so used to being on my own and now this horrible sickness, I feel so trapped in my own home.And it's so hard to see the frustration he is going thru and I can't help him.Praying is my only help and knowing God will get me thru this.
I guess my husband still has a decent quality of life. He "reads" the same 3 books over and over (1 page a day or so,) I read to him which he enjoys. I'm planning a nice trip for us in the Fall, and he likes to ride along with me wherever I go--grocery store, out to lunch, other errands. But he cannot initiate an action on his own apart from making coffee (with varying degrees of mess/mistake) and riding the elliptical. (I have to turn on the tv for him though.) Beyond that, his most common activity is standing in the front yard watching the world go by, even though there's not much world on our street. He can talk and "converse" to the extent that you stick to topics like "look at the goldfinches!" or "what were things like when you were a kid?"
So, it's hardly fair to wish his life away for him. But, you know.
I asked for a hospice evaluation a few months ago. I was told by the RN, not quite yet.
He is actually profoundly demented, but physically he isn't doing all that badly. He basically can't ask for what he wants and some of the time he isn't answering to his name anymore. But he needs one more symptom before they will take him on.
I'll be honest, emily, I was disappointed. You are not alone.
Emily...therrja and mary75 said it best for me, in response to your admittance. Whenever the NH calls and tells me there is a "crisis" with his health, a very large part of me practically screams, "FINALLY!"....with, of course the flood of other emotions I'd stuffed back (discussed earlier by most of us in another thread). Yes, this IS wearing, wearying and ruining. I HATE this limbo where I'm hanging day in and day out....month after month. I can remember nothing pleasant that wasn't marred by AD, now that I look back. I also feel that I want to get on with MY LIFE and eventually find someone to share it WITH. A REAL partner. But, how do I fairly pursue THAT?? I really can't. On hold.
This (AD experience) changes us. Not just our quality of life in general (unless you're rich as Rockefeller, have "old money" reserves somewhere), but inside. Our self-esteem, our view of life. We begin to rethink our life-choices, weigh our worth as persons, understand with frightening clarity the fragility of our own mortality....and for me, regret can eat me up if I let it. Add in any physical impairments we may be experiencing ourselves, volitile family relations, and...well, the formulation is POISON, deadly. Physical work, my neighbors, this group, a couple of female friends, livestock, pets (birds, cats, hound dogs) are my salvation and link to sanity. That, and trying (with much effort) to remember that this is only one season in my life. It WILL end. I'll be ready for it when it does. Until then, I ask my higher power to carry me through today. Again.
I don't believe anyone here who knows one bit about AD and it's impact on the husband/wife relationship would possibly rap your knuckles for baring your thoughts. If we're being fair and truthful, I believe we all wish to breathe that sigh of relief when the end comes, painful as it was/will be. For myself, yes....If I had a Genie, I would also wish that my husband couild be himself once more, too. But, unlike most of you all here...........I'd also wish that he'd find someone else to have been with all these years! Not ME!
Somewhere on these boards, there is a discussion whose title is something like - "When they said it can go on for 20 years, I cringe." Obviously, that is not the correct title or I would have been able to find it and bring it to the top for you. My point is that you are not alone in your thoughts. What you describe is similar to a prison sentence, except at least a prisoner knows when his sentence is going to end, and he will be released.
Thank you for having the courage to write what many are thinking, but do not feel comfortable saying.
On the other hand, I am sure there are many caregiving spouses who want to hold on to whatever is left of their spouse for as long as possible. No one is right or wrong. We cannot help the way we feel.
Oh emily, Please do not feel guilty, those are normal feelings, especially when this has gone on and on and on. I also have a twinge of almost envie when someone earns a star. Now call me a monster if you will. I have had a wonderful life, a wonderful husband but this disease has already taken him from me. I wish for the star not only for myself but also for him. No one who has not walked this journey could ever understand this.
We are in our 10th year, stage 7 for the last two years and have now entered Hospice for the second time. It is almost unbearable but yet I love him with all my being. Now go tell that to someone who has not been there. No one could understand this but those who have.
Again Emily, do not feel guilty, I am not correcting you I am just telling you that anyone who says they do not have these feelings after 6 to 10 years are not carrying the load all by themselves.
Take care and hang in there. My husband was diagnosed at age 60, healthy as a horse and on and on it goes.
OK-I have my star. I didn't do anything to earn it-it just happened. My husband will be buried on Sunday-Mothers' Day. I haven't sorted out my feelings yet-but I do know that I am glad it's over. Bill was at so called end stage for 3yrs-and very nasty for too many years before. I have a great deal of healing to do. Had a long discussion with my rabbi this morning while planning what will be a private graveside service. No one but my kids and I remember any of the good stuff. The rabbi's questions of what we were feeling only served to open old wounds. Our kids suffered, too.
bluedaze, Anyone who has walked this journey to the end has most certainly EARNED their star. To be able to see this journey through, be there for your dear husband and not loose yourself in the process has certainly earned a star and a bright one at that. YOU OF ALL PEOPLE HAVE MOST CERTAINLY EARNED YOUR STAR.
I think when I see that a person has reached the point of earning a star here on this board, it means to me that they have fought a good fight and were able to see the dear loved one through this journey. To be able to walk this road to the very end with a loved one is the most one could hope for with this disease.
I am (perhaps with stunt girl) even farther on the side of not wanting to put my life on hold at age 54, and my husband is only in the early stages (of Lewy Body Dementia). All my husband's long-time irritating characteristics (losing track of what he said he would do, creating chaos, slowness, have gotten much worse. The only way I have found to manage my frustration and actually be nicer to him is the emotional divorce thing--not seeing him as my partner any more. I've even signed up for a dating service, though I don't expect anything to come of it. The one I signed up for is for people who are polyamorous: believe that it is possible to have more than one partner at the same time. Though they believe very strongly in honesty, and I'm not intending to be honest with my husband. I listed myself on the dating service as separated, though I explained in the text that I still live in the same house as my husband and will continue to do so and to care for him. I'm looking for a woman, not for a man, to explore the side of me that I didn't get to live during my marriage. I said i was looking for someone interested in a relationship that would be a secondary relationship for both of us. As I said, I really don't expect anyone to find me interesting, but I at least feel I am exploring who I am and what I might someday want (not to get married again!).
I honor those of you who can devote yourself to caregiving out of love, but I didn't have a strong enough relationship with my husband for that to work for me. I've done a great deal practically to care for him--our house renovations (which I conceived and managed) have made his life better. But I have been supressing so much anger at him, and this seems to be the way out that works for me. I don't see it as a preferred option, but it is better than living the next N years consumed with frustration.
Everyone's comments, including Bluedaze's, are the reason why I have heard that many AD widows and widowers do not feel comfortable in conventional widows/widowers support groups. AD widows/widowers lost their spouses, their marriage, their connection, the person they married, their relationship, so many years before actual death, and have grieved for so long, that when the end comes, it can be a relief. Only others who have been through the same can relate and understand.
It is so incredibly difficult to live with and take care of a stranger, while your own life is in limbo, always waiting and wondering when and if you will ever have a chance at a normal life again.
SO well said, joang!! pamsc.....you are the first person I've read here that ADMITS to having signed onto a dating service!! ME, TOO! Out of absolute frustration at not having access to people through conventional means.....clubs, religious organizations, etc., where I could actually have an opportunity to meet someone for friendship, possibly long-term relationship, that is what I've done, too. Nothing has come to anything....just flurries of e-mails back and forth. One or two meetings. But, it does my fragile self (ego?) good to test the waters and see if I'm even still desirable to another human being. Just seems like this disease leaves only dust and ashes in its wake. Yep, I'm waiting for that time when I can finally be free again. Hope its sooner than later. Jen
Emily, you have a tremendous talent being able to hone in on your feelings and situation and to also express those things in your writing. Thanks for your honest post that elicited such feelings from many of us. I agree with what you are saying and no one can blame any of us for wishing this was "over". We are living with "adult children" and it's very difficult to describe this situation to those who are not living it. I do not honestly discuss my situation with either my friends or family because I know that my situation does not "translate" and many of the things that I might honestly say when people ask would sound shocking. So, here we are, sharing this experience on Joan's blog and gaining understanding and perspective from our caregiving peers. Thanks! I feel better just knowing how others feel about this crazy situation.
Emily, It sounds like you have been having some bad days. We all do understand and have our share of them. Some of us are farther along than others. We know how wearing it is day in and day out. None of us are perfect and there are times we too feel chained to this disease. It is especially sad that your husband is so young. Mine is nearly 20 years my senior so I am in your age group. This is not what I bargained for either..where are the bike rides and walks on the beach and that trip to Rome? Gone that's where. It sounds as if you need some resepite time. Is there anyone in the family who could come and stay for a spell so you could get away...I mean really away..as in maybe out of town? If not, can you get someone to stay with your husband while you treat yourself to a day at a spa? Something fun and away from it all? Don't worry about blowing off steam here..we all do it now and than. By the way, I think we all would wish that genie would grant us the wish of having our dear sweet loved one back again.
Emily, somewhere on here, I have said, that I had it much "easier" than so many of you. Jim passed away only 1 yr after his dx. I suspected something was wrong for several years before, but thought it was us, not just him. I was "lucky", his body gave out before his mind. He was 62, I'm 54 we had so much more living to do. He knew me, could carry on a conversation, express his needs. He lost the ability to walk and then breathe. It was heartwrenching, but nothing compared to the years of torture so many here have lived through. What we all go through is extremely personal and individual. There is no right or wrong way to feel. Joan is right, no one but those of us here will/could understand how we manage to go on. Arms around, Susan*
Emily, I think we discussed this before under that other thread Joan mentioned. We have much in common. I commented elsewhere that my husband has not been the affection, loving, thoughtful, gift giving, saying sweet words, etc. like many on here. When we were in public we put on good shows. The other evening I was leaving my sister to come out to the motorhome and she said he is afraid I won't stay with him. I told her how I feel: I wish I had left him in 1985 after his affair/sexual abuse with a teenager. I wish I had not been naive to think he would escape this disease that runs in his family. I wish I could walk out now but then I would feel guilt. That is not me. But when he goes into a facility and no longer knows me I just may walk away and not look back. I don't really know.
I too think "I wish it were him" when someone's spouse dies. I dread this going on for 25+ years like his dad. I fear he will go slowly and by the time his journey is over I will be too old and unable to do more than sit around and wait to die myself. There are so many here that are so in love with their spouses, they had great marriages and deserve to have longer time together - before their spouse doesn't know them. I dread the whole future. At 57 I have never been alone. I went from home to marriage at age 18. Yes, I have worked most of our married life but have been unemployed for 2 years now and who knows when I will find one. My skills are so outdated now - I am at the bottom of the hiring pool. I don't know if I will have a chance to work again before I won't be able to because of him.
So much uncertainty - so much unknown. I think for those of us still young (too young to draw SS), if our spouse dies we will use our source of income and if we can't find a job, where will we be? That is why I have to manage our meager finances so I can keep the life insurance.
So Emily you are not alone. Unfortunately not everyone here had great marriages. There are those of us that just had a marriage, often in name only.
Yes to what Mimi said--It's not been a great week! His spatial disorientation has been a little more "off" than usual, necessitating a little more guidance (things like taking an elbow..."let's go this way," or "let's put your muffin in the microwave--the microwave is over here.") And he's stewing and resentful about it. The stewing resentful phases were only an occasional blip on the radar in our "normal" days, which I could ride out for 1 day, twice a year or so, but it's not fun for a week twice a month. Of course I feel for him--what a terrible way to live, so unable to navigate the 3 dimensional world around you--but I can see that the AD caregiver as default bad guy gestalt is overcoming us regardless of how pleasant I attempt to make my necessary helpful intrusions.
So, therein lies one of the huge, ridiculous rock and hard places of this line of work. You accept limbo, you give constant help and plan your days around someone's needs, and you're still doomed to be perceived as the bad guy. When it's like this, and--as far as you can see, your guy's health profile suggests that many more years of it are in store--it's tough not to want to put it into warp speed.
Emily, thank you for starting this discussion. I must admit that I, too, feel some envy when I read that someone's spouse has finally been placed in hospice or when someone has earned their star. I feel very guilty for saying so. But it's the truth. I am 42. Thanks to AD, my life has been shrinking since I was around 37. I'm tired of waiting to live. My spouse's decline has been at a snails pace, and he is physically healthy as can be. So... who knows when it will finally be MY time to live? When I'm 50 or 55, or??? To be free again is in my thoughts daily. (I am not in burn out stage. I'm just saying.... I do feel that envy you and others are referring to.)
Edited to say: Oops. I should have had my morning coffee before posting this morning. ;-) By hospice, I had been thinking along the lines of NH. Of course, two very different things. Of course, my feelings of dreading, and yet at the same time, hoping for those things are still along the lines of what I had written above. Hope this makes sense.
It may be a slight consolation that I'm not the only bad guy. J's funk has gone on for several days now, and this morning he admitted he was grouchy (as if it wasn't obvious enough.) And that he "woke up not liking you or your children very much." Note that my children are also his children, and they are a very nice group of 4 young adults ranging from 18-24 who treat him with understanding and kindness. So, while I accept the not liking me part as the caregiver's lot, I don't understand why the plague has spread to our children as well. But then, what CAN be understood about AD? You would think he'd at least like our very compassionate oldest daughter who just got home, yesterday, from a 6 week internship in Costa Rica, but what the heck. I guess he thinks she and her sibs are in cahoots with me, and our evil plan is to exclude him from anything meaningful while seeking to limit his freedom. Or something. Trying to make sense of AD thinking is never wise.
This is where the emotional divorce comes in, at least insofar as I would apply the term. You can hardly expect someone whose mind is trapped in this kind of impaired paranoid cognitive dysfunction to contribute much to a marriage, hence, it's easier to approach dealing with it from a strictly clinical, non-emotionally invested point of view.
So that's what I TRY to do, although the fact that I've posted way more in the past couple days than my average should suggest that even I cannot completely emotionally detach.
Moorsb..."Throw Moma Under the Train"! LOL! So, THAT'S where my kids were on Mother's Day! They were too busy watching that movie and that other one, "Mommy Dearest", to call me I guess!