This is my fourth go at being the chief caregiver of a family member. My grandmother died of cancer at home 40 years ago. Her mind was absolutely clear and she coached me in her care. My father, with vascular dementia, died 20 years ago of pneumonia, (the “old man’s friend” as it is called), also at home. Twelve years ago my mother with AD died in a nursing home following a fall that broke her pelvis and made it impossible for me to care for her at home. Her doctor accepted her decision to refuse to eat or be fed, and she faded away within a week. Now I provide care with deep love for my dear partner who is in stage 6 dementia. She is a gentle spirit and she receives patient and gentle loving care from me. But do I hope that she and I are released from this dreadful AD soon? You bet. Do I know that this may not happen, you bet.
This disease is insidious. It can as easily take down two people as one. I am determined this will not happen to me. Her daycare program tried to have me shorten her hours due to her “exit seeking”. I refused to let it happen. Ever since she started going 4 days a week, I’ve begun to feel human again. I can meet with friends, attend seminars, work on projects. I’m grabbing at any opportunity to improve quality of my life, and at times it may mean my partner is unhappy for the last hour and a half of daycare and the staff have to deal with it.
I will grieve when my partner dies, she is a good woman, but I will not feel guilty for wishing/wanting her to die soon. Are others feeling this way, or am I the only one?
I can remember having whole long discussions about this on this forum back when Larry was still alive. So many of us were in that position--well, I guess every AD caregiver is. You desperately want and need release, both for yourself and your partner...but the only way to get that is to have them die. And you don't want that either. It is just a painful and impossible dilemma. But you are right that this is a disease with at least two victims, and you must hold onto your own life...as you clearly are doing. You must save yourself, so that AD doesn't get you, too.
I pray he will have a heart attach and die peacefully in his sleep. I pray he avoids the horrible stages I'm expecting for his sake and mine. I'm early in this journey and I'm wondering how I'm going to get thru thiS. He has Lewy body so he has days he is so good almost normal than bad days. I never know what to expect, so I can't plan much. He is not ready for daycare I call it volunteering but he won't budge. I'm starting Tuesday w a helper and he will be told she is coming to clean.
I can so relate to this...I haven't been around here much lately because I feel so overwhelmed & under-energized. Only one day of daycare so far, he's been having urinary problems big time (urgency & missing the mark!). The doctor has him on an antibiotic for a limited time to see if that helps (urine sample was fine). Could be prostate.... for the second time with the aide - the scheduler just "forgot" when our newest gal reported off sick. I really liked her, hoping she will be able to show up next week. I told the scheduler to just forget it, I'd do it myself (showering, etc.) I think they need to find someone else for that particular job!
My own health is not really good right now...going for an endoscopy on Monday, possibly a CT scan of my gut. I have figured for years that my digestive system is what is going to take me out....but please, not right now! Sometimes it's just too much. I really do hope for a heart attack for Dan (he had one 20 years ago) so that neither of us has to go through this to the end I could deal with my own issues so much better if I didn't have his care to concern myself with.
I'm just rambling...that's the shape my own brain is in at present! :)
To all who are dealing with placement--all of your comments were very well said and I can so relate to all. Mim, my husband too was missing the mark also and because he was ambulatory until the end he would urinate anytime and anywhere despite the fact that he was on a toileting schedule. It turned out to be A problem for the nursing home because by law they would not restrain him. One wife, I too hoped and prayed for an end because I knew deep within that I was rapidly getting to the end of my capacity to go on. I am not positive but I think Lewy body tends to progress faster. Try to take one day at a time. Remember it is okay to lie I order to get the help and support that you need. Great that you are getting in someone to "clean". Whatever you have to do to maintain your sanity is what you need to do. Starting early is the key because they will get used to someone coming in and will pave the way for the next step. LindyLou, yes the disease is insidious and can very easily take down 2 people. I too was determined that it would not kill me and and tried almost everything that would give me some respite time from his care. It was the best thing I could have done because I survived and you will too. I am now dealing with my 94 year old mother who is sharp as a tack and just had surgery and cannot be left alone. But compared to what I went through with my husband, this seems much easier. God bless
Mim, my husband had the same issues earlier on in his illness. The urologist said he thought it was most likely a side effect of some of the meds he was on at the time (seroquel, clonazepan). Now he's totally incontinent. Probably mid stage 7. Strong as a horse though.
I've had an epiphany this morning - I simply am not "the good wife" that I want to be, or that others think I am. I don't know if I have the strength & courage to do this. I either don't want to do it or I just cannot do it. I so admire others on this site that seem to give care with so much love, even through exhaustion, frustration, anger, etc. I really don't think I have it in me. I think I've always been rather selfish with my time & it's really coming through now. I feel guilty, ashamed & even disappointed that this is the way it is, but I'm afraid I'm going to let some people down, namely Dan & some in his family (although they really don't have anything to say about it. He only has one sister left & she's 87 & getting kind of "dotty" herself. The rest are nieces & nephews) I've been checking into respite care for him if I'm going to need hospitalization again, whether he likes it or not that's the way it will have to be.
Gee, I sound so tough today, don't I? :) Let's see how long this lasts.....
Good grief, Mim, stop beating yourself up. Not everybody is a caregiver--when the time comes, and it sounds like it's coming sooner rather than later--just make the arrangements for whatever more formal care will meet his needs--whether it be a day program or actual placement. I can remember DD saying years ago, "I'm not an aide. I'm not a caregiver. I'm not taking care of anybody." Larry and I laughed together privately at the time, and said, "Oh well, at least we know where we stand." It's genuinely OK. One of my mothers-in-law was like that, too. She just didn't help anybody out in that way, in the sense of hands-on care. Her parents and her own m-i-l were taken care of...just not by her. Some people have some talents, and other people have other talents. I am ashamed to say that I can't do abstract math. I know I'm supposed to, but I just don't get it, can't do it, don't understand it, and am a disgrace to the regiment. Other people will have to handle the algebra, trig., and calculus, because I just lack the gene. I was under the bed when God passed out the mathematical genes. Well, it's like that with caregiving, too. If you just can't, you just can't. And that's OK.
Besides, it sounds like you're going to have to deal with your own health concerns anyway. You're going to have to take care of yourself, because Dan is certainly not going to be able to do it, and in fact may pull you down with him. So just figure out how someone else or some other entity can provide services for him, and you just take care of You. Hugs ((( )))
Mim. I think this is why I started this thread. Not that long ago I lay down in the bathroom, pounded my hands on the floor and wailed: “It’s not fair. It’s not fair.” I think that was my wake-up call.
In my career I’ve been a caregiver for the elderly, and in my life I’ve been a caregiver for my grandmother, my father, my mother and now my wife. I’m over 70 and statistics say I have over a 70% chance of dying before my partner does. Well no. I’m not going to do it. I will be loving to my partner and gentle. I will continue to care for her as I am able to and still be able to have my own life. But I am not going to sacrifice my life in order to make her life infinitesimally better. If we were not fortunate enough to be in a county with a PACE program, my partner would be in a nursing home now, and I would be visiting her as I could.
I believe you and I (and others) have to take care of ourselves so we can live a good life with fun and joy and adventure, whatever that means to us. We don’t take care of ourselves just so we can be better caregivers and continue to give more than we can. It’s taken too long a time for me to reach this conclusion. Please, if you can, don’t feel guilty, disappointed or ashamed. We are not Sisyphus condemned to push that rock up the mountain everyday only to do it again each day for the rest of our lives. And I truly believe our spouses wouldn’t want us to if their minds were working right.
Elizabeth, I thought this was the place where I COULD beat myself up!! :) :)
I think maybe that I've reached the place where the realities are beginning to finally sink in. I don't like them, but it is what it is (as in the popular phrase of the day). It's hard to be honest with oneself.
Lindylou, I do not know who Sisyphus is, but I sure like the words after it...a great analogy. Pushing the same rock up the same hill every day.....by the way, I'm 74, so I have more yesterdays than tomorrows. I'd like to be healthy enough to enjoy a few of them! I can't even be loving & caring right now, but I suspect my not feeling well has a lot to do with that.
Sisyphus is a man punished by the Greek gods for stealing from them. He is condemned to push a huge rock up a mountain. Every day, just as he reaches the top of the mountain, the rock rolls back down to the bottom and he must start again. You can use google 'images' to find artists' renditions of Sisyphus. Has to be more to life than this.
I would be interested in knowing if the men on this site feel guilty or ashamed that they are not willing personal caregivers or if they feel that they are selfish or not good husbands because they do not want to be caregivers.
Myrtle I think a caregiver is a caregiver and has nothing to do with gender or orientation. I don't thing I have ever felt ashamed but I have expressed feelings of guilt on this site, that is until a number of you jumped up and gave me a slap across the head and said what are you thinking. I don't think any of us male or female want to be caregivers it was the hand we were dealt and we all do the best we can.
i don't think I have felt selfish or that I was not a good husband but I have felt a deep sadness and sorrow as I watch my wife slowly slip away. There are so many emotions and feelings that creep in as we go through this, I know that I will survive, I wil get through this and hopefully have a life after, I have that in my future my wife doesn't, that is very upsetting to think that one day I must try to start over without her.
myrtle, I can't imagine where you're coming from with your suggestion that the men on this site "are not willing personal caregivers or if they feel that they are selfish or not good husbands because they do not want to be caregivers". Have you somehow missed reading the posts from phranque, marsh, texas joe, old don, and myself just off the top of my head, and I'm sure there are many more who were, indeed," willing personal caregivers". Could it be that they just don't bellyache about it as much as the women seem more prone to do? I'm pretty sure that none of us, women or men, would "want to be caregivers" given a choice. I just received an email yesterday from an old rock hound friend of mine from Texas who introduced me to this message board back in 2008 -- some old timers might remember him as Sam~TX -- advising me of the January death of the beloved wife for whom he'd been the devoted caregiver for ten years or longer.
Like Mim and others caring for my husband is not my cup of tea! From as far back as I can remember I was taking care of someone - younger siblings, then worked as a nurses aide in a hospital (not nursing home). I work swing or graveyard where you I did more of emotional care than physical care and because it was in a medical hospital the care was for someone that was getting better. Plus, after 8 hours I went home. I always had great empathy for the patients and loved helping them. Wish I could feel that way with my husband. Instead, like others, I am fight resentment every day that I allow myself to 'think' about our life as it is vs just taking the day as it goes. I find resentment is the worse when he wants to go every where with me - the store, for walks to take the dog out, to the laundry, when I need to do something he use to do but now I have to try to walk him through it as I try to make him feel useful (which usually just makes me frustrated and angry), etc. In fact last week I got so frustrated with him about something, when the urge to scream came unlike in the past this time I let it go. It did not even phase him. (we were inside so no one saw it).
I was walking the dog this morning when a lady came out to talk. She just moved into the park a couple months ago. She wanted to tell me there was a woodworking show put on at the Kennewick senior center by seniors and that there were tickets in the laundry room. I told her we did go to the Arts and Craft show yesterday but I rarely do things. That I find it hard to do things when he can't remember it. Then she said she knows cause her mom had AD and the lecture of 'its the quality of life that is important, you need to do the things they enjoy whether they can remember or not'. I was polite then said something to a guy down a few spots that was washing his car and got away.
Yes, resentment and can't wait to place. Do I feel guilty, ashamed or weak - only about the resentment.
Rona, My question had to do with gender, not orientation. It is commonly thought that women are more psychologically suited than men to be nurturers and that this is a result of biology and culture. The popular press is full of articles on this subject. Here is a link to one essay. If the link does not work, the article is in Psychology Today, April 23, 2012, and is called, “Man the Fixer, Woman the Nurturer: The Caregiving Gender Gap,” by Diana B. Denholm.
www.psychologytoday.com/blog/the-caregivers-handbook/201204/man-the-fixer-woman-the-nurturer-the-caregiving-gender gap
Gourdchipper, My comment was poorly phrased, I should have said, “I would be interested in knowing if, LIKE THE WOMEN ON THIS SITE, the men on this site feel . . . “ The words I was echoing were from Mim’s post, in which she said that she realized she was not the “good wife" that she wanted to be and that she felt guilty, ashamed, and disappointed. I was wondering if men also felt like that. (I guess not.)
Lindylou, I do not wish for my husband’s death but that is because I am selfish. I need him to be here for a while longer for my sake - so I can look at his dear face, hold his hand, and snuggle with him. Anyhow, I doesn’t matter what I wish for - his lifespan is out of my hands. As for caregiving, I never had any interest in it and to the extent I did it (and still do it), it is because I have to. I have no guilt about not being a natural caregiver. As elizabeth* pointed out, some people are just made that way, although the article says that caregiving comes more naturally to women than men.
Myrtle I accept that your post did not read like you intended, I felt like groundchipper, like we were relegated to 2nd class caregivers. I am well aware of the societal stereotypes that women are more nurturing we are taught that from an early age yes of course girls play with dolls and boys with trucks however that is changing. Lindylou I only included orientation as you started the thread I also felt like including race colour religion etc. we are all equal and I had felt slighted. But hey Myrtle I am over it you see some males do have some sensitivity. All those emotions you talk about are there but most males don't express them the same way societal norm as well.
Reminds me I have mentioned before I was a high school principal and the worst were the girls they could be nasty, mean and downright awful to each other and it could go on it seemed forever. Boys they would bop each other in the nose then it would be over.
Hi Rona, I did not realize you had read my post the same way Gourdchipper had. Since you have not been on this site for long and do not know me, I can see why you might have thought that I would be so tactless as to say that. I do not have a strong opinion about whether women are naturally more nurturing than men but based on the people I know in my generation, I would tend to think so. The author of the article I mentioned definitely thinks so - she says that women are "biologically programmed" toward nurturing and men are programmed toward providing/protecting. Even if that is not so, cultural expectations surely have some effect. If society expects women to be natural caregivers, then women who do not feel comfortable with that role might feel guilty or ashamed, or think they are selfish. So I was wondering if men felt that way, too.
I guess it must be strange to others, but (tact aside) I do not think it is shameful to be an unwilling caregiver. I was never a "willing personal caregiver." In fact, I would call myself a "reluctant caregiver." That's why I sympathized with what Mim said. Strangely, though, I never felt guilty about it. My husband was the nurturing one in our family. When AD started to affect him badly, I took care of him at home but it did not come easily - even helping him brush his teeth was difficult for me. (Not to mention preparing meals - I barely know how to cook!) I always felt like a kid trying to do a grown-up's job. Now that he is in LTC, I no longer feel the stress of my incompetence and I am able to be nurturing, but in an emotional (not a physical) way.
I've known women who were more masculine than me. I know women where I'm far more nurturing and even feminine than they are. Some people have the emotional range of a walnut. Some people are visibly guessing what emotions even are. Some people would rather die than show their emotions or confide something very personal.
Some people won't step on a bug. Some people don't see bugs and don't care. Some people plot and plan and can't imagine any other thing. Some people feel their way through life and rarely have a thought about it. Some people take you into their home. Some cross the street to kick you.
Some women are horrible mothers and some men are horrible fathers (Joan Crawford and Bing Crosby come to mind). Cary Grant quit hollywood completely to bring up his daughter himself. Some of the strongest leaders were women often with more cahonies than all the rest of the men in the room combined (Margaret Thatcher comes to mind).
I can answer Myrtle's question. I don't feel ashamed that I didn't want to caregive. I think you have to be nuts to want to caregive. I think hating caregiving has nothing to do with being selfish where we mean, I presume, we dared to have a thought about ourselves. Every caregiver by the end knows their self was shredded whatever their enthusiasm levels. Having a penis or a higher voice doesn't enter into anything important.
I doubt there's a human reaction I didn't have in the torture we're calling caregiving. I wouldn't wish caregiving on my worst enemy. I did it for her and for us and for duty and because I had no real choice. There are no style points and nobody tells the worst stories anyways.
You do get in trouble Myrtle. I know you were following a thought and meant no slight.
If you hate caregiving it means you're a human being and if you're doing it anyway then it means you're a pretty good human being and the more you struggle in it in your own way the more you sacrificed in your own way. Don't worry, that won't make you feel good about yourself afterwards.
I'll tell you something. The alzheimer's spouse is never at bat. It's never about you. It's telling to say that any thoughts about ourselves seem as selfish as they are impractical. And here's what I'm telling you. Any shred of selfishness you can hang on to will help you later because I can guarantee that you will be looking for your self.
Lastly, try and hang on to some respect for what you're doing. You are supporting your partner at great cost to yourself whatever your emotions or thoughts right now. That is simply one of the best things one human can do for another. I was dead to words like this when I was a caregiver.
One reason I care for my DH (actually my ex) is because he was a caregiver to his Mom when he was 13 years old. He is more than deserving to receive good care now himself. He and his father took care of his mother until she went into hospice and then died at 50 years old. It was a hard and often time tortuous for him. As an adult, he would cry remembering how he loved his mother but at the same time wished for her death. I go through some of the same emotions but not with the intensity that he described. I think that part of the reason that many of us pay a great cost to take care of our loved one is because our support system falls away. Friends stay away. Hiring home caregivers or paying for respite care is expensive. As a result, we become isolated and lonely. I am 12 years into this. I never thought it would be this long. It seems like forever. I have been unable to retire because of his AD. I plan on retiring in three years and do not know what I will do if DH is still alive. So I am at that stage, I am sad for both of us that the AD is going on and on. He hates it the most. Another reason I take care of my DH is that he has familial EOAD. Our daughter helps me take care of her dad. I live in fear that she will get EOAD also. For that reason too I take care of her dad. I would not her to feel that she would be abandoned if she gets EOAD.
I had a whole thing written & hit something wrong...it all went away! Oh well.... I haven't completely read all of the comments after Myrtle's, but I took it as women tend to beat themselves up if they think they aren't the ideal, nurturing caregiver they think they should be. Men, on the other hand, being of a different emotional makeup - do they chastise themselves in their head if they feel they aren't the loving ideal caregiver they want to be? When I commented ( way above) about realizing I'm not the good wife, it was really kind of freeing for me. Maybe I won't expect so much of myself. I don't think Dan realizes either way, sad to say, unless I really blow it big time, like I did one day last week. I can't afford to do that to myself - I'm either going to have a stroke or a coronary! (My blood pressure has become a little higher within the last year or so - not high, never was, but higher nonetheless.)
Dishes in the commode. Trash including the plastic liner in the toilet. Wet towels in the trash bucket. Bird seed poured onto the floor. And carefully scrubbed rolls of toilet paper lined up on the sink. Vinegar poured into the root beer. Water left running in the sink. Front door left open. This is just a half hour of work yesterday after daycare. And it is work for her. She can and does keep going all day. She is tidying up by moving things from their proper places to new ones. It is her contribution to the household. She believes it. She sees it with different eyes. And as long as I do not get upset she is okay. If I do get upset, she gets angry. Neither one of us does well with “angry” due to our pasts, and in our own shared past avoided it. So, I’ve found a way to visualize these activities of hers, say thank you and just start straightening things up. Since she is not hard of hearing I whisper sometimes, which hides some irritability which might escape, and I smile. Most of the time. Sometimes I just lose it, but it truly makes things way worse.
I am an Activity Director and was/am good at my job. But my partner’s attention span is so short that any intentionality on her part is gone in less than a minute. When she spills something, she insists on helping me so we go to the kitchen for paper towel. I take some, hand the roll to her, go back and perform the clean up. When I return to the kitchen she is carefully wiping down the sink.
She needs one-to-one attention at her daycare and here at home. And daycare wants to shorten her hours! Mim, I don’t know what I would do if we added incontinence to this scenario, and we probably will shortly. I let her wander at night, I tried a motion sensor device but then I found I was not getting enough sleep. If I wake up, I bring her back to bed if she is up. In the morning I put the house back together.
Wolf, you are right. Nobody chooses this and we muddle through best as we are able, knowing it is for the one we love. Myrtle, I love my wife. I embrace her gently so I won’t get angry at whatever messes she has just made. She leans into me and my love overflows. But I want all this to end tomorrow. And this site is the only place I’ve felt comfortable sharing this wish. I want to say goodbye to her before I hate my life…….. In the meantime, thank God for daycare.
I think the funniest thing my DH did was to put the full bottle of wine in the toilet as if it was cooling. And he certainly had a thing about toilet paper. Good thing we have a BJ's membership because he wasted a lot more than he actually used.
Lindylou, Are there ways you can simplify the house to keep opportunities to help at a minimum? I guess I'm thinking along the lines of "out of sight, out of mind." Also, I'm reminded of some of the work that Sherizee found for "AL" which at one point was peeling potatoes, lots and lots of potatoes. Sherizee also had different sorting projects. Can you find "work" for your partner which might keep her occupied in one place. Repetitious is probably good. Maybe folding and refolding napkins or towels…"Oh look, here are some more!" [let alone that they are the same ones as before which you are unfolding as fast as she folds]!
I've been thinking about this one to see if I can come up with some practical suggestions. I was going to say the same thing as Carol--make the house as simple and spartan as you can, with the obvious triggers put away so she can't get into them. I had to hide the toilet paper and anything he could conceivably throw into the toilet--paper towels, wipes, small hand towels--as he would plug up the plumbing all the time. Use the thin, septic-safe toilet paper, and only leave one roll--maybe a partial role--in there. (You can have your own private supplies of toiletries--just keep them separate and hidden, and carry them in and out in some kind of travel toiletry kit.) I know they will find things to damage or destroy that you wouldn't have thought of...one patient got up and sat on the vacuum cleaner in the middle of the night--urinated all over it--thought it was the toilet. Larry did that to a side chair, only it was number 2, so it didn't soak through and I was able to cut off the soiled fabric and just take the chair to be re-covered.(Cost as much as a new chair.) He urinated all over my good sheepskin slippers that night, too--guess he thought they were a urinal or something-- and I just discarded them. Anyway, if your partner likes to wash dishes, maybe you can leave your evening snack or drink dishes unwashed so she can do them in the middle of the night. Get rid of all the trash at bedtime and get it outside in the trash cans so she can't get at it. Or leave a laundry basket or two full of clean but unfolded clothing or towels--so she can fold them. Try to set up "stations" for harmless activities she may be likely to do to keep herself occupied. And make sure your "stuff" that you don't want her to get into, is safely hidden away. Your purse, car keys, your office supplies, craft items--whatever it is for you. Often they take the credit cards, keys, etc. and hide them for some reason. I've seen that a lot. (Look under your sofa cushions once in a while.) Make sure she cannot get out of the house, fall down stairs, or hurt herself on the kitchen appliances--maybe take the knobs off the stove,if that's an issue. Some people just disable the stove completely, and use a microwave, toaster oven, hotplate set-up. (Things that can be more easily made inaccessible) Usually medication is the clue to managing the behaviors, so I don't know whether some combination of meds to get her to sleep would help--or just end up with a drugged-up, woozy person stumbling around the house and falling. You might want to talk to the doctor about this. I didn't have much luck with Seroquel, Ativan, Depakote...the usual suspects--morphine was the only drug that really worked well, but that is for later in the process, of course. The management at this stage is such a combination of things, and a lot of trial and error. I've had families ask me to authorize an aide to sit in the house through the night so the family can get some sleep. There are pros and cons to that, assuming you can afford the private pay--I know that a Medicaid-billed care plan is task-oriented, and as far as I know won't pay an aide to just sit there and read or crochet all night "just in case." The other thing with having an aide in your house all night is that they'll have to have a light on, and may want the TV on turned low (I'd say no to the TV, but some aides are addicted)--or be on their cell phone all night--which may be more aggravating than helpful. (Just depends.) Or maybe you could stay up to watch her all night--like pulling an 11 to 7 shift--and then sleep while she's in Daycare. None of this is ideal--none of it. This is one of the hardest things to deal with, and I went through it, too. For months I slept in little snatches, and just got up every time he did, because he was at such risk for falling. The exhaustion is beyond belief. I wish I could be more helpful, but if moral support helps at all, know that you've got it from me.
Katlady37 - Thank you. You have to laugh or else you cry, and your wine bottle story and the toilet is still making me laugh! I’m sure that is what he was thinking, unless of course he was a teetotaler and that was his way of disposing of alcohol. LOL
CarolVT - Your activity ideas are all sound, and I have used them for the four or five years we have been on this journey. I want you to know they really work. Its just my partner has moved beyond them.
Last year her compulsion was the snow - we live in Massachusetts and we got a lot of it last winter. She shoveled snow every day, moving it from place to place, long after everyone else was done. As a result she got carpal tunnel, and can no longer peal potatoes.
We used to sit together and cut coupons, roll yarn, sort plastic tableware for picnics, etc. She would stand at the sink and run water rinsing dishes - I always left enough in the sink for her - and it would keep her busy for an hour or so.
Now at her stage, she has to keep moving and keep carrying things. She can’t sit still. She has to keep moving and putting things all over. For a while I left cracker boxes out so she could carry them around the house if she wanted. Then she started opening them and crackers and cookies and crumbs were everywhere. I put them up high now so its clothes, laundry, decorative items, dishes.
I usually hide the birdseed under the table, and empty wastebaskets as soon as something is dropped into them. Stove has no knobs within reach, poisons including those pretty dishwasher and washing machine detergent ball are out of reach.
Sigh. I probably could do more - but then she would probably move to the bookcases……
Onewife - I keep thinking of you, new to all of this. I’m new to this website, just not new to dementia. My suggestion to you is to keep on adding your experiences and two cents. Start your own discussions/threads. This group is so supportive and you will not feel so alone.
Elizabeth, I have to reread your suggestions over several times. It is so compact. But there are several useful ideas which I am going to try or to modify. Thank you. :)
Elizabeth, Myrtle, many others here are very knowledgeable about how & what might be done. I just singled those two because of this particular discussion ;)
Hi Mim, Yes that is exactly what I meant: Women seem to beat themselves up if they think they aren't the ideal, nurturing caregiver they think they should be, and I wondered if men also chastise themselves for not being the ideal caregiver. I'm glad that commenting about your feelings was freeing for you. Blaming ourselves for not meeting our ideals just uses up our energy.
Wolf, Yes, I do tend get in trouble! And it's usually because I am following an idea that has intrigued me. Clearly not a good thing to do on this site.
Lindylou, Of course, I know you love your partner - that has been clear from the beginning. I hope you did not think I was saying otherwise. You are not the only person who wishes that her spouse will die soon. This issue is has come up a lot in the two years I have been on this site. Although the thought has crossed my mind, it has yet taken hold, but I will probably feel that way some day.
My husband had an activity level similar to your partner's. He was like the Energizer Bunny. He emptied all the dishes, etc., out of the kitchen cabinets (like you, I thanked him for his help), and had an obsession with paper towels that sounds similar to katlady's husband's obsession with toilet paper. He flushed so many paper towels down the toilet that they created a clog in the drain from the first floor; the plumber had to open up a pipe in the basement to clear it. He stuffed paper towels into the hopper in the pellet stove, which burned out the auger motor. Even after it was repaired, the stove never worked properly again. Then there was the "exit-seeking." He was a Houdini. Daycare asked me to pick him up 20 minutes early because when they opened the door to let the other people out, he ran out and darted between the cars in the parking lot. He would leave our house (despite a baby monitor, a motion detector, and an extra lock) and speed-walk up to the 4-lane state highway at the end of our street. I would get a text message from the GPS monitor he wore on his belt and sometimes the neighbor kids would knock on my door and tell me he had “escaped.” I would get in the car and catch up to him. Once he had already reached the highway and was standing at the bus stop. He started doing this lot in the morning when I was getting dressed or in the shower. I stopped taking showers when he was home. My sister told me that a dementia patient in her area had been struck and killed on a similar state highway and that the worst thing about it was the effect on driver who hit him, who seemed to be permanently traumatized. I realized it was time for my husband to go into LTC, since I could no longer keep him safe, he was endangering other people, and the stress of his care was killing me.
Oh, Myrtle. I just heard the love you expressed for your husband and I wanted to express the love I feel too. I’ve never felt judged on this website. It is a god send. Its amazing the friends this website has sent my way. Thank you all.
A few years ago someone was telling about putting a baby gate at the bedroom doorway at night so their spouse could not wonder out. I has to be high enough so the can't fall over it. For them it worked. Their spouse if they got up just wandered around the bedroom.
Another good suggestion. It's interesting how some small simple things work and some big or more complex things don't. Hope you will feel better tomorrow, Charlotte.
Every night I lugged a heavy dresser over to the stair top landing and every morning I lugged it away again. I did that for almost a year. It was full of books and it worked. I used to sneak out to get groceries after she got stuck on that white square moaning like she was afraid and refusing to move. I wore out I remember yelling at her that she was working her way into a nursing home. Was that what she wanted?!? It didn't matter because I finally broke from the constant strain of things getting worse.
I had taken her off all drugs to try and help her be as natural as possible. The best home in the city offered a weekly four hour break and they told me nobody would take her in her present condition. That's when I broke down sobbing I couldn't do this anymore. Not my best decade. They drugged her into a stupor. I never felt any warmth in that place. The others in that weekly thing sat there and even though they had musical acts and story telling and things - everybody just sat there stunned. I wanted to ask about one person who was just always in the same place week after week whether anyone had checked their pulse.
I knew that I was wearing down and even though I love her, I didn't want to do it anymore. I need no excuses or reasons and sought out tough words that tell the truth. I put Dianne into a home she was never coming out of because I didn't want to do it anymore - and I defy any judge to rule that less than exemplary on my part. I gave up on her to save myself and I believe to this day that I went way too far and that if I hadn't put her in then, I would have punished myself for no other reason than I couldn't think straight about it. Who can on such a subject.
I wished Dianne dead many times. When she struggled to eat when she wasn't staring at the ceiling because there was nothing that worked anymore. When she stopped eating three times and we all went on watch. I hated going in there and feeding her. She had no life and no hope except this slow death. I wanted her to have a quick painless one.
I got a lot of advice and I'm the type that asks everyone. As much as I desperately sought help, I understand now that nothing could help me much because the fulcrum of what this is has two people in it and nobody else unless they live in the same house. It's you and her or you and him and everyone else is outside.
When it finally ended and much of this year passed, I realize now I don't care when I put her in or when I screamed or whatever the heck we both did on any day. I painfully had to go through the bad memories and I still dwell on some things but the specifics of anything don't stand out and I don't hear much of that with the exception of Marg78. For me a year later it's the fact of it and the totality of it. It's the extent to which it ripped up my life and destroyed how I used to think and spit me out into a foreign land.
I was selfish enough to care about myself too though where I'm not ashamed of that anymore than that I hated caregiving. I'm sane and those are the sane responses. I only had to answer one question. What's the saddest thing that could happen knowing we had Alzheimer's and she was definitely going to die? That I get taken by this too. What's the best thing? That I help her through this bad thing happening to both of us; but, that I make it.
If you feel awful that you think about yourself I have some information for you. That is exactly what is going to help you later.
And if you are able to move steadily away from this experience, then you may see it in it's totality down the road. Their passing does not end things so much - it begins them. The day may come when we had Alzheimer's and that covers an encyclopedia of things just as I was a parent covers an encyclopedia of things. They are the titles on previous chapters in our lives.
I'm 65, male, and breathing. Therefore I will do on the shopping list of what passes with women my age looking for a man. I also look fabulous (work with me here) and so when they come which they already have, and see no ring on my finger and chat me up - I'll tell them I'm gay and it's so hard to find a good man isn't it? Well, let me tell you I'm pretty sure that's going to work like a charm.
Selfish - (adjective), when you take a selfie with your cell phone and miss getting part of your arm, thats a selfish.
And finally for Charlotte:
Resentment - what the abused prisoner dares to feel about their lives as though they had the right. Which they do.
Wolf, how true how true that if one feels bad about thinking about themselves, that is exactly the thing that will help you later. I would constantly beat myself up and tell,myself how selfish I was but I realize now it is probably the one thing that helped me survive the most. I went to a wake last week and while talking to a friend, a woman came in with her husband who had vascular dementia, he could talk and walk but was pretty far gone. The poor wife was not,open to any outside support. We told her about daycare, respite, support groups, and hospice since he had a lot of other issues going on. She had already given up her very self to his care. It was so very sad. On one level she knew what she was doing but I think the emotional connection or whatever was just too much to let go of. So sad.
Wolf, I'm a new member on this site and this is my first comment. I want to thank you for the honesty in your writing. You've captured some of the feelings I've had in the past few years.
Thanks, Wolf and elizabeth. I've been reading caregiving sites for a couple of years now, and you're right that most people don't get it. (Something I didn't realize for a while.)
I guess I can chip in a few thoughts about the topic of this thread, though they're not much different from what others have written. I've been dealing with my wife' serious illness for about nine years, with a couple of years of short-term recovery during that period, but with full-fledged dementia having set in about three years ago (about stage 6 now). I'm her primary caregiver, though I have a professional caregiver come to the house a few times a week.
Like Lindylou, the original poster, I'll grieve when my wife dies. But I'll also feel relieved, for both of us. That's a difficult balancing act, isn't it? I have to think about what my wife would have wanted, before dementia, what my wife might want now (that's hard to know), and of course what I want for myself.
Guilt is inevitable, for me at least, even though I can live with it and not think of myself as a bad person. I could have been a better husband in the early days of our marriage. I could be a better caregiver now, if my personality were different (if I were better at small talk, more nurturing, more patient, and so forth). I could start thinking of myself as being a caregiver, first and foremost, and to the exclusion of most other things I wanted out of life.
I've given all this a lot of thought, and I end up trying to do the best I can, given the person I am. If that means compromises, if that means putting my own needs before those of my wife, well, sometimes that's the way things have to be. Fortunately, I get a good amount of support (emotional, I mean) from my family and my wife's family for my decisions.
RSA, You sound like you are doing great. I think we all do the best we can with the circumstances we are dealt. I wanted so much for the disease to end as I was not sure how much longer I could endure it and I had him placed in assisted living and not at home. Assisted living brings on a whole new list of concerns but I knew I could not keep him home. Having good family support is a great asset. I found that I grieved 3 times--once when he was diagnosed, once when I placed him (many tears), and after he passed. The grief after he passed is much deeper I think because I did not have the time to fully grieve the other times.
Thanks for telling me about this, CO2. I've only gone through the first stage of grief you mention (the second will come soon, I think), and it lasted a long time.
This is something that I think is hard for caregivers of spouses who don't have Alzheimer's to understand. I grieved for months after I found out my wife's dementia was permanent, because the person I knew was gone. Not entirely, but you know what I mean. I don't know how many nights I stood there after putting her to bed, after saying "Good night"... I would say a painful goodbye. Eventually there was some closure--or at least I stopped feeling the need to do that.
The line at the top of the main page on this site, "Our Issues Are Unique," does capture something important for me.
Yes, they're there but they're not there...the beloved person is slowly turning into someone else. It is a nightmarish disease for the spouse...and people who say, "I understand perfectly, because my mom-dad-aunt-uncle-grandfather had Alzheimers." don't understand at all. They mean well, but they don't get it. Losing that special closeness, the person you share your days and nights with, the person you hug and kiss last thing at night and first thing in the morning...they are still there in body but some horrible, creeping monster is destroying their brain, right before our eyes like a horrible, slow train wreck that you can't stop and you can't escape. Yes, our issues are unique indeed. I guess for the hundredth time I'll say how much I appreciate Joan for starting this website. It's been 18 months and 24 days for me, and I'm still coming here to Joan's for support. Right now I am thinking of all the Easters Larry and I had together--going to Mass, eating dinner at our house or at some other relative's...upstate or in the Bronx or Manhattan...boy, I like to think I'm looking forward not backward, and that I'm living in the moment--hey, I'm still here and I'm going to try to have fun... but I sure miss those days of celebrating holidays together. Easter is worse than Christmas in a way, because it's all about the Resurrection and New Life...and Larry is up there in the cemetery, resting peacefully with his Hudson River views. Sigh.
Sorry, I'm going to stop this. Didn't mean to start a whiny rant.
I have read all the contributions to this thread several times. Each time I am finding something new that helps. And thank you all for caregiving advice.
First I too want to welcome RSA to the website and the conversation. And I agree, we can only do our best.
Thank you, Wolf. Can I pull out a quote from your contribution?: “What's the saddest thing that could happen knowing we had Alzheimer's and she was definitely going to die? That I get taken by this too. What's the best thing? That I help her through this bad thing happening to both of us; but, that I make it.” That has to be our goal, not just a wistful thought. There has to be intent on making sure that though “we have alzheimers” that the care giver half of this duo survive.
I don’t think always putting our spouse’s needs ahead of our own serves any purpose and it certainly is not sustainable. The only thing is, if our support network is not supporting us, it may seem there is no real alternative.
Lindylou, the endoscopy went fine, nothing to report out of the ordinary so far. CT scan tomorrow (the 30th), so that should give more info. Something in my bloodwork, & pancreas enzymes - not that I understand any of it! I'd just like to get to the bottom of whatever is going on & feel a little better. Actually, I haven't been agonizing about it, my main concern is what do I do with Dan if something more needs to be done. I'm researching respite care, but haven't gotten far enough with it. We (should say I) have spent several days trying to figure out & deal with urinary/bowel problems with him, but I think that's behind us - no pun intended! :) Thank you for asking. I just don't comment very much...I am just so tired.