Last night I was reading a book that had nothing to do with caregiving. (I could hardly believe that, myself.) One chapter discussed the effects of chronic stress on your health. They quoted one medical study of dementia caregivers. (Have you ever noticed how many of the studies on stress use dementia caregivers to demonstrate their point? I guess it's because they can't find anything that produces more stress.) Anyway, the medical study found that while normal people responded to a flu shot with a fourfold increase in antibody response, only 38 per cent of the caregivers responded to the flu shot. The book said "The long-term care they provided for family members and loved ones was taking a toll on their own health as well."
I just sat there, looking at that same paragraph, over and over. It seemed so outlandish that I actually looked up the medical study myself. Too pitifully true. Being a dementia caregiver can actually impact your health to the point that your immune system will not respond to a flu shot. And then we wonder why we feel rotten, and why we start having health problems of our own.
Soon I'll be into my twelfth year of caregiving, and more and more questions keep popping up that I have no answers to. One of those questions is why, as a caregiver, I tend to act like my needs and desires aren't as important as those of my husband. I started out by wanting to make this as easy as possible for him. I think I've just about done that. But in the process, I've just about destroyed myself. I don't mean that I've worked hard, or that things have been rather difficult and inconvenient. I mean I've just about absolutely, totally, completely destroyed myself. I have no life whatsoever of my own. I'm so exhausted I feel like I'm in a fog most of the time. I feel completely dead inside, almost like I'm not even a person any more. And increasingly, I think that's the wrong approach. Why do I think that to be a good caregiver I'm supposed to give up my entire life until my DH no longer needs me? What about my life right here, right now? Why do I always think I'll have time for me "later", when I have no guarantee that I'll even survive my husband?
I don't just wonder about this for me. I've talked to other caregivers, and read all the posts on this web site, together with countless articles and entire books about caregiving. And most of the other caregivers I hear about are also destroying themselves. Why do we keep doing this to the point where family members have to sit us down and do an intervention to get us to stop? Do we think if we drop dead caring for our spouses that it will somehow stop the progression of the disease? Some days I just keep trying to put one foot in front of another because I'm too tired and stressed to sit down and actually think about how I'm living—to really evaluate whether I'm doing the right thing or not. Meanwhile, inside me the little voice that used to be screaming for help has just about given up hope. No help came. Nobody heard the screams. Now it's more like a little whimper of desperation. And I think…what about our well-being? What about the caregivers? Don't we matter, too?
I think one reason caregivers wear themselves out is many do not have the help. Many live where services are not available or their income limits help (either too little or too much), and reasons like that.
Yes, as time goes by we loose our identity. My husband made me promise not to 'kill' myself caring for him like his mom did caring for his dad. I do not plan to but a lot depends on what help/services I can get when the time comes.
JanK, You are asking a vital question. One I'm afraid too many Caregivers ignore or push off--for later. I did exactly what you described from your readings and observations. My Caregiving year lasted 24 years.first because of Mental Illness and later Vascular Dementia. I took care of DH, the household, and our daughter. I made sure she had opportunities she might otherwise have missed. There weren't enough hours in the day. I didn't take care of myself beyond absolutely basic necessity. I had to seek treatment for Clinical Depression during the 3rd year. I chose both meds and counseling. The meds enabled me to function better while the counseling taught me ways to identify triggers leading me to slide back into the stress induced behaviors that would lead me right back into Depression. I started doing better at looking out for me. Not well, but better. About 7-8 years ago, I called to arrange for a caregiver so I could get a dozen teeth pulled. Our Case Manager called back to say that was set and, she'd also arranged that from then on, I had 4 hours per month coverage so I could get away--have respite. I thanked her and hung up, asking under my breath..."What the H* am I supposed to do with that? I figured it out and things were a bit better. I had learned how important getting help in early was--both to lighten the load and to get DH used to having help besides from me. Eventually DH had to be paced--new stressors. I dealt and I improved my self-caregiving. After losing DH July 2012, I faced a rude awakening. My own disability had been galloping along getting worse and I'd been unaware. I'd jus adjusted and kept moving. In the year and a half since he died, good things have happened too. My Blood Pressure has improved; my IBS has improved, and my Diabetes is better. All onset during my Caregiving years. I am sleeping better--and more than 4 hours a night- Did that for years. I've even lost a little weight without dieting. I am slowly starting to look for interesting things to get involved with. These improvements would likely be more advanced, had I done a better job of taking care of me during my Caregiver years. One thing I learned late---your LO will be better off, will be easier to care for if his Caregiver is healthier--mentally, emotionally, and physically. Taking care of yourself is not selfish--it males you a better Caregiver. The Dementia Road we travel is horrendous. We have taken on the task of getting our LO through this trip with Dignity, wrapped in our love. We need every bit of strength and stamina we can muster. We will be the only survivors and we need to do that well;--the best way to honor what we refused to let Dementia destroy--our love.
I hear you, JanK, I was thinking about how many years in the cargiving business I was and I always said 8 but in re thinking it, it was at least10, including my husband's first big surgery for hip replacements. From that time on it was down hill. Oh at the start he could manage many of his normal activities. But by the time he had heart surgery in 05, the memory issues began to really surface though slowly at first. And just as you have and are doing, I did whatever I could and so well that I was told that my husband lived on borrowed time " for a very long time" because I saw to it that hid medical needs were always taken care of. Now I am almost finished with all the estate issues, just in time for tax time...groan. I was tired after Ozzie died but now that I am about done with the estate business I find I am more tired than I even realized. Interesting you mention the health issues....my blood test this year was not as good as last year! I was blessed last year at this time, actually, that my husband's neurologist intervened..he saw what was going on, and when I told him I was starting to have migraines, he directed me to make an appt as he said " I can help you with that" and indeed he has. Were it not for him, and his supervision putting me on Zoloft I know I would not have managed to get through the funeral and all this estate business as well as I have. But I am tired to the bone...and my doctor has put me on a new eating plan, and I am going to see if I can afford to join a gym nearby. I have had sciatica and am just about past that now..It has been a hard row following Ozzie's death..
I have not been travelling this road as long as some of the others, although my DH had several other health issues that required my caregiving before his official diagnosis of dementia. And I knew that I was getting stressed, and doing nothing about it, until my DD did an intervention (guilted me into going to the doctor), where, surprise, surprise, I discovered that I had several health problems, all caused by or made worse by stress. I had never had any problems with my health prior to that. That was in April of last year, and we are now dealing with my health issues one at a time (most life threatening ones first). I wasn't looking after myself, my weight had ballooned out of control, but my DH was getting wonderful care. Why did it take significant health issues on my part to realize that I could only do so much, that my life is important too, and that unless I look after myself, I'll be on the wrong side of the grass before my DH?
Charlotte brings up a good point - some of us don't have all the services that are available for others in terms of respite, day programs, etc. And Carosi* is also right, we need to survive to honor our love for our spouses.
I still have to make compromises - I can't do everything I used to do, because help is not available to me at those times, but I am also learning that I am important. I have just been invited to a quilting retreat in June. I have told my friends and family that I am going, come "h**l or high water!
good for you bqd. I finally made it to the doctor. I was not thrilled with his manner but he did give alternatives to statin drugs. Actually my numbers were not that bad, but he will accept the supplements I take that I just started back on. Last time they lowered the numbers. He did ask me to increase the niacin up to 1000mg. He also gave me Rx for Wellbutrin which right now I am back in a good spot (December was horrible) but I started it because I know there will be stress in the future and if it works for me I will maybe not be so short tempered. I told him it had to be one that did not cause weight gain so I will be watching that carefully. Back in 1985 i was on Desyrel (trazadone) where I went from 150 up to 210 before going to a new doctor who said that is what caused the weight gain and I changed to Prozac. As many here, since the diagnosis I have piled on more weight. I go back in a month and if I have gained any I will go off it.
JanK - I agree with the other members...what a great topic.
Yes my health took a beating and now that he has gone into care I'm slowly getting better. Though I'm getting cramps in my shoulders and neck area...I carry my stress there and now that a lot of it is gone and I'm relaxing the muscles in my shoulders and neck aren't used to being relaxed and they are cramping up. Interesting eh!
One thing I always think of is, I was in my late 40's and early mid 50's when dealing with this and I don't know how I would of dealt with all this if I were much older like some of the members here. I can't imagine being in my 70's or 80's and trying to look after your spouse and also be kind and look after all the aches and pains and slowing down as you age. Guess that's why I can't see myself getting into another serious relationship again. Friend with benefits that's it.
Well, I have asked the social worker to book a room at the respite center for my DH in June, so that I can have my quilt retreat vacation. But before that happens, I have DH going into respite in February while I have some medical issues dealt with. I don't know the exact dates that I will not be able to look after DH, only a ball park time frame. However, getting a room at the ALF for respite is difficult, and almost impossible on short notice - there are very few rooms available, and they get filled quickly. So, I am having DH go there for most of the month of February, with the option to extend if necessary. I was feeling guilty about having him there for the times that I would be capable look after him here at home, but then it occurred to me that I haven't had more than a day to myself since he was diagnosed in September 2012. I went through the Christmas/New Year holiday season with no break at all because all of the usual services were closed for the holidays. I am tired, stressed, and I need a break. And according to the research that JanK was reading, I might as well not even have had the flu shot that I got last week. :-)
I am trying to learn to take care of myself - I've lost weight and I feel better for it. But this caregiving is a constant struggle and we get so involved in looking after our LO's that we forget ourselves in the process. So, while my DH is in respite, I am going to try to not feel guilty, and do some things for myself that I can't normally do when he is underfoot. And maybe I'll begin to feel less tired and less stressed.
Charlotte, I am glad you made it to the doctor and I hope that the Wellbutrin works for you.
I noticed something interesting the other day...when Ozzie was with me and I was in the trenches of caregiving, i would sense I was sort of stooping over some and would make myself focus on standing up straight. Then the other day, I was sauntering down the street and all of a sudden noticed that I was not sort of stooped over in fatigue, that I could actually feel that I WAS standing up straight and so I was.
It is truly amazing how lost we become about our own health and welfare as caregivers..so much goes by the boards,,,the way we look, the wt up or down, not enough time in the day for the primping we used to have time to do..by the time the journey is over we look like we are the Wreck of the Hespers ourselves.
For those of us who have doctors who are aware of what is going on and stop to try to warn us or help us too, we are truly blessed.
For me, I try to always be out in front of whatever is brewing with dh. However, each move into new (and unpleasant) territory always sends me for a loop. I get panicky and upset even though I know that I've made it through everything preceeding this. A year and a half ago I got Sepsis. I diidn't even know what it was. Today I know how truly lucky I was to have survived that infection - a friend's dh is about to pass due to massive infection in his system shutting everything down (Sepsis). So, yes, this disease of our spouses takes a sometimes deadly toll on us and getting away and preserving a life of our own is damn difficult when your spouse is so needy. Just not sure how to manage the "me" part most of the time. I think that will come when/if he is ever placed in a facility away from home. Not looking forward to that, either.
Charlotte, My DD is on Welbutrin. Please be advised that one of the early side effects is that it can make you nauseous. But it passes, so don't get discouraged and quit taking it. She also asked for something that wouldn't cause weight gain. Good luck with it. I am on Mirtazapine. I tried Celexa and it was keeping me awake all night. As with our AD spouses, All these drugs work differently for us too.
Charlotte I just read your post, and I really hope the Welbutrin helps you alot. I did read that it is less likely to cause weight gain than other ones. I was scared last year when I took the Celexa, but I did not gain. In fact, as it calmed me quite a bit, I felt less like eating for comfort.
However I am not going back on them. But I wish you good health dear Charlotte. And all of you. Sometimes I forget how this ongoing sadness can affect my health, and I am starting anew today with vitamins, Omegas etc...hoping it will at least help a little.
I am going to google "wreck of Hespers" right now...very curious. ( :
Unfortunately, Wellbutrin didn't have that affect on me!! I attribute any weight I've gained to steroids, lack of exercise and miniature York Peppermint Patties!!!
Charlotte, are you talking about a more natural approach to lowering cholesterol? If so, please share what you take. Since my DH has been diagnosed I have developed high blood pressure and some autoimmune issues that are caused by or made worse by stress. Now my doctor tells me that my cholesterol is high and I am very reluctant to start medication for that if I can lower it some other way. Thanks.
ring, take a look at: http://www.amazon.com/gp/product/1583335218/ http://www.amazon.com/Practical-Paleo-Customized-Whole-Foods-Lifestyle/dp/1936608758/ for one kind of alternative approach
Jan K: Thank you for your post. It serves as a reminder to me to try and take better care of myself. Two years ago I started a weight loss program and lost 47 pounds. Knees felt better - blood pressure was down enough to lower my medication, etc. Because of the stress of caring for my DH I have allowed myself to gain 30 pounds of that back. We truly don't have time for ourselves. Some nights I finally sit down in my chair after dinner and just shake my head - where did the day go? I manage to keep the laundry going - and this morning while he slept actually swept and cleaned the kitchen floor! My solace is my prayer time in the morning. It keeps me going through the day.
Trying to come to grips with placing him in the memory care unit of an ASL facility a mile from our house - if I can make it through the guilt and dread of this I hope to try and recover some of my health and sanity.
My grandson and I were watching a little kid's show the other day and they were singing a little song that can so apply to us all. It goes: "when you feel so mad that you want to roar, take a deep breath and count to four."
Sending prayers and blessings to each of you as we walk this long road.
Jan K's post on Jan 22 could have been written by me. I couldn't add a thing. I am going into my fourteenth year of Alzheimer's caregiving--I am 64 and DH will be 89 in one month--he is very fragile with a weak heart, and I'm sure has only lived this long because I've taken exemplary care of him in every way. But I've neglected myself and my own needs, even while struggling not to. But it is impossible…he is just too much care…when I get some time to myself because he is sleeping or blaring the TV and clicking the remote aimlessly for hours on end at top volume, I just kind of zone out, watching an escapism DVD on my portable DVD player in a far corner of the house, or cruising the Internet endlessly on my laptop. I feel so guilty that I am not making better use of my time…since I'm stuck home with him a lot, I should be exercising in the basement, or practicing my music (he can't hear my harp, so it doesn't agitate him the way my piano practice does), or working on my writing. I'm trying to do a light, flippy romance novel for escape…but frankly, romance just seems like a bad joke. A lot of the time I am just wandering around in a mental fog, wondering how long this selfish, senile, tippy, pooping old man can possibly live. (And he was once the light of my life…I feel so guilty for feeling the way I do, but I am so tired and lonely.) And yes, I've gained too much weight, let my hair go gray, because what's the use of coloring it, wear pretty much only black, navy, gray…because what's the use of nice clothes…and don't bother with manis or pedis, because so what. I don't go to the doctor or dentist anymore, because there just isn't time in the day…and if testing would reveal I need follow-up for anything, what would I do with him while I went in for procedures or whatever. (So far I think I'm fine--overweight and nearsighted are my issues.) It wouldn't surprise me in the least if I died. And it wouldn't bother me, either.
Dear Elizabeth, I would so like to get you out of that situation for at least two weeks, so that you can recoup a bit. I'm going to suggest a visit to your doctor to ask for his help in getting the ball rolling. He/she will know how the system works. Your doctor's chief concern is you and your health. Tell him what you've told us. You need respite.
Yes, Mary75, there is no question that it is too much. I sold our home in NY and we moved here to OH in Dec. 2012--so we've been here 14 months--the idea was that my dtr. and s-i-l would help me with him, and I would help with the three grandchildren. So I do have childcare commitments as well as the eldercare role--but they have pretty much bailed out on being able to fulfill their part of the arrangement due to their work responsibilities and wanting to spend weekends with the kids, doing activities and so forth…they are always too busy to help with DH, and my dtr. can't handle him anyway.Also, divorce is in the air. S-i-l did watch him while I went to my mother's funeral last month. (Just a day trip.) So that was something. I was foolish, of course. As a nurse, I've seen these situations a million times--the adult children convince the elderly parent to leave their home of many years, move out-of-state to be closer to family, (like move back up North from Florida or whatever), and then the family is too busy to even socialize with them. The elderly parent is lonely and isolated, wishes they were still back with their friends, etc., etc. I knew better on some level, but I was so tired and lonely…desperate for some help. I do like seeing the grandchildren and being involved with them to some extent, and this little house on the park is going to be so nice for me when I am alone--much more affordable than the big New York house. I don't have a doctor--can't imagine when I would be able to go--but DH's drs. office girls gave me some leads on possible respite. I will definitely follow up, but it is hard to get the energy. Plus I'm not sure that meaningful amounts of time off are going to be affordable anyway…since I've left the workforce to move here. DH is one of those that never would leave home to go to a daycare or anything like that. He just loves to sleep all morning and then watch loud TV all day until it's time to go to bed again. He is on a walker and does have some falls, and is totally dependent on me for everything--he can wash himself, brush teeth, and sometimes showers (we have a small bathroom with grab bars everywhere, and a handheld shower), but he does not understand the toiletries (washes his hair with conditioner instead of shampoo, etc.), so the bathroom is almost bare, and I keep my things separately in another room (he just uses anybody's toothbrush that he sees, so needless to say, his is the only toothbrush we leave in the bathroom.), and he always puts on dirty clothes, and then gets indignant if you try to get him to change. Plus there is poop patrol, of course. Anyway, since I am so much younger and a nurse, he sees no reason for anybody else but me to provide the care. I do apologize for all the whining, but of course there is nobody else to talk to except this group. Certainly I would never let anybody else know how my dtr. manipulated me and there is nobody on God's green earth who wants to hear the saga of the toileting issues. Sometimes respite means just burying myself in a book or watching a DVD somewhere in the house away from him.
Elizabeth - you are not alone in ""I feel so guilty that I am not making better use of my time"" but we should not. Yes you have other things like your harp you could be doing, but sounds like you are really depressed. Being a nurse, you know the signs and that there is help. But, as you stated being a nurse your husband expects you to be the one to care for him. Like many of our spouses, they can not see what it is doing to us - the isolation, the caregiving, etc.
""wondering how long this selfish, senile, tippy, pooping old man can possibly live. (And he was once the light of my life…I feel so guilty for feeling the way I do, but I am so tired and lonely."" Do not feel guilty and know you are not alone. We all get tired and lonely, we all get exhausted physically and emotionally often becoming numb.
As for weight gain - I think way too many of us here have done that. For me it has been 50 pounds.
I also escape on my computer.
Is there a way to can see his pcp? You can have the office staff watch him in the lobby. Or call his doctor and find out where to get some respite so you can at least see a doctor. If he does not like it - too bad. Remember his reason button is broke and you are in control.
Charlotte, thanks. It is on my to-do list to find a doctor and a dentist, to find a way to get some respite, and to get my hair colored. (Yes, and I just brushed my teeth. That's one accomplishment for the day!) : 0 )
Caregiving for our spouse while we consider our well being is beyond difficult. The demanding nature of this disease drains the blood out of me and I feel like I am running on empty.
As I recently told a friend, caregiving for a stranger would be an exhausting job. Add to that the constant emotional Pain and distress I feel as I watch my DH decline struggling to communicate a word is unbearable. Dealing with his anger and pouting because he feels I don't trust him with the car keys pains me.
Then we must run our households, worry about our finances and the future.
How can we feel well? Sometimes I don't even care. Other times, for a moment I'll think of myself. Till the next thing happens to remind me of this dreaded sentence for my DH and me.
I do want to take care of myself but it is sooo hard.
You nailed it, Lorrie. That is exactly how I feel. This evening I just sat by the fire (gas logs--no work involved) and watched a light, humorous DVD. That helped…and my son-in-law showed up at the door and shoveled all my snow…an unexpected and unusual plus. I can't get DH to eat any dinner--all he wants is candy and soda. He did take his meds (with soda…sigh.) So I am going back to the fireside and read a book. I can only do so much…I had a healthy supper of the fish, spinach, and baked potato that DH wouldn't touch, and now I'm going to have an apple and a glass of milk.
Many of you have listened to Teepa. This video she talks about when to place. I like the way she describes it: there comes a time when you have to give less as a caregiver to give more love to them.
Hey, Please stop, and give yourself a break. Caring for that special person you love, even though they probably aren't sure of your purpose in their life now, is still something that you feel the need to do, knowing they would have been there for you, or just the fact that you care so much, and want to make their time with you as good as it can be. Been there, done that. It's been over a year now that I lost my guy. Only now, this long after my loss, did I actually drive out of this town and focus on what I wanted to do. Before, if I left town, I was toted along with sisters, or children, and admit I enjoyed myself, but it took over a year to get myself to feel healthy and mentally able to travel somewhere under my own effort. This weekend I actually drove myself to the coast and did things alone. What an awful feeling I thought it would be, but it was such a HUGE step, and opened my eyes.
I don't want to describe it any further, but on my way home, I thought “Wow, I'm going to be OK”. After such a long time, I was finally feeling like I could continue with my life. Geeze??? My point is, that, over the years, I had let myself get caught up in his daily care needs, for reasons I felt justifiable, and let myself fail. My health suffered, I aged quickly, and ignored my own health care to the point that it took me over a year to even feel like I could move forward.
I just need to let you know, that as difficult as it is to accept, they will pass on. The last thing they would want, is for you to loose so much of your own life as a result. If you do not care for yourself now, it will take such a toll later. Make that effort. Take care of yourself like you are caring for them. It's surely what they would want if they could be given that choice. Get yourself together, even in the exhausted state you are now in, and take the steps to care for yourself. You can find a way, even with their constant needs. Find a way. Do it.....................Hugs!!!
For those of us currently trying to get through this journey, it helps to hear someone feels the same. I am not alone or just not handling things well. Thanks Elisabeth and Charlotte.
Janny. We need you and others with a star to share your experience and wisdom. I feel so grateful for your advice.
This website and all of you are lifesavers. I can't imagine not having this place to go to when I am at the end of my Rope. You give me hope and a rope to gang onto!
Jsnny* has it right on target. In just a couple of days it will be 6 months already that I lost my sweet spouse. I miss him every day. Like so many others, taking care of my DH was a full time job for so many years. Now I am trying to get this house sorted out..after so many years of the caregiving role, dealing with the house was left to drift..well now it is all around me and drives me almost as much as caregiving chores did. There is SO much to do..I get tired just thinking about what to do first let alone next. The estate mess is just about wrapped up..still have the taxes to do yet and they have to be joint...and a wee bit of banking can be finalized now. On the up side, I did get my kitchen lights done and the room painted and it looks so nice. But the rest of the house is papers and projects and it looks like a bomb went off. And there still is the energy thing..it got up and went... I find I tire easily now, hard to get to sleep and sometimes don't get up until 9. Who cares??? The bottom line, for those still in caregiving mode is to see your doctor. I did and I would not be able to function had I not had caring doctors.And they still keep tabs on me, my primary at least once a month. I have had injuries, my thyroid seems to be wanting to act up///or maybe I should say down...and there is the Alz 40 to deal with...so much is daunting still and will be for a time yet. If you are depressed, get help, see the doctor for recommendations on how to cope, get some counseling, get to the ALZ meetings if you can..We tend to think that after the caregiving is over it will be smoother sailing..it will be eventually but before the waters do calm, there will still be some rough seas.
I just booked a weekend visit with our son who lives In Toronto (about 5 hours away) in March. Two days, one night, just me. I am soo looking forward to two days of easy conversation and not looking out for anyone else but myself. The funny thing is I really agonized over spending the money on something so "frivolous" since things have been going fairly smoothly at home and I don't feel too stressed right now. Then I remembered my plan is, whenever possible, to take care of myself BEFORE I get to the end of my rope. It's easier to keep going along if you don't have to stop and climb out of a deep, dark hole. Woo-hoo Toronto here I come.
Good for you ring! I'm learning that same lesson ..you don't have to wait until you are drowning to reach out for help.
I was almost drowning by December when a daughter intervened and looked into a day program without first telling me. Thank Goodness! My DH loves his "volunteering" and is happy and eager to go. I have more energy and patience when he returns. For the first time, I feel hope I will make it through.
We must take care of ourselves first. I know for me that has been a process to learn.