ok I have been brave. I have been courageous. I have fought for my DH to get him the best possible care. I have gone to see him 4 days a week. I went this morning. He slept the entire time I was there. I woke him up so that we could have lunch but he was zonked out as soon as we got back into the new room (which on Monday was fine with him). I drive the hour back home, get a phone call from the NH. He is screaming and wants to talk to me. He has been kidnapped and I had to come get him right now. He did not remember that I had just been there, that we had discussed the new room, that he had agreed that it would be better because it is bigger and has a better bathroom, and that he would have a roommate and he said hi, how are you not two hours ago. I am so tired. I want to run away and never come back. I love him so but today REALLY got to me! Do you think that maybe it is time for me to truly take some time off from going to see him? When I don't go he calls me all the time. I feel like I am in quicksand! My sweet husband would never pressure me like this if he knew what he was doing. Is running away ever an option?????
Sounds like a break is in order. How does he call you? Does he have a cell phone? If not, tell the nurses he can't call you. I would let it go to voice mail. If you have caller ID, you can see if it is the nursing home calling and can answer.
Hi dellmc, I'm not sure why the nursing home put through a call to you while your husband was screaming. I guess it's worth a try to see if hearing your voice would calm him down but since it did not seem to work, what's the point? Is there someone at the NH who you can talk to about coming up with a schedule of what he does each day and how to deal with these outbursts? I would also be curious about why your husband slept for the whole morning and then zonked out after lunch. Is he getting too large a dose of medications?
I just looked at some of your other posts and I see that that you have been taking care of your husband for 14 years. This morning my doctor lectured me that 8 years was too long for a person to have the kind of stress I'm dealing with. So you have had much too long a haul. I agree with Charlotte that you should take some time off, especially since there is someone to care for him.
Thank you so much for your comments. I guess sometimes I just feel like I need permission to just not have to deal with this 24/7. He has only been in the NH since January and in so many ways it is a relief, but yet on the other hand it is just another form of torture. Myrtle, this sleeping has been on and off for several months. He has sleep apnea so bad that when he does sleep he never really rests. He refuses to use his cpap. I asked them today if he had had any extra medication and they said no. The stress just wears me totally out and all I want to do when I get home from these visits is get in the bed. I feel exhausted down to my bones. Yes, he has a cell phone. He has not used it very much and cannot figure out to use it at all now, but it is programmed to call me and only me. He now has to ask the nurse to punch the button for him. He had begged me for his phone and I thought that it would make him feel safer. In his lucid moments this made sense to me. I have talked to them about these episodes and they seem to happen when they wake him up to put him in his wheelchair. When he is sleeping he doesn't want to be disturbed, but they will not let him stay in bed all day and they make him sit up. I think this is good since he would sleep all of the time if they didn't and would probably get bedsores. Yes, this long haul, no matter how much we care is a grinding nightmare with no end in sight. Because I love him I have felt that I must be there for him, but now I am wondering if maybe I should be there for ME for a while.
In the long run, it wouldn't matter if he were home with you, and you were by his side 24 hours a day. This disease will run its course in its own sweet time, and the end is inevitable. It will win. You can't hold it back. All you can do is keep yourself sane and healthy so that you can make reasonable decisions for the both of you - no one else can do it as well as you can. That means you have to find a schedule that WILL WORK FOR YOU. You need to pace yourself in order to survive - no one else is going to care for you.
You need to take care of yourself. This may mean less visiting or taking a break. My wife is losing the ability to call on her cell (she can some days, can't most) and might ask a nurse to call for her on the main phone. In the past she would call me up to 100 times a day, these days she doesn't call on most days. 6 months ago I made my cell not ring when she called (this was part of her moving into a 2nd ALF and to break her of the calling habit) and blocked her on my home phone. You can use this technique for the times you don't want calls from him.
While the NH is legally required to call you in certain situations (whenever he falls) you can give instructions on when he may call on the NH phone. My wife was using the nurse station phone when she first moved into his ALF since we "lost" her cell phone charger. The staff disconnected this phone and just said it was broken. You need to carve out times of quiet for yourself and not have the stress of anticipating a phone call.
You never know what will work. The very experienced staff expected my wife to forget about her cell phone after it stopped working a few weeks. They ended up begging me to giver permission to get her cell working again because she was so psychotic about it. And there there was something else I needed to bring her which they hoped to brake a habit because they needed to calm her down and she was calling 911 on her cell.
While there is a need to get your husband out of bed he also needs enough sleep. He needs lots of sleep and he will act worse if he doesn't have enough and the NH has to balance his need for sleep with the dangers of being in bed too long.
Dellmc53, I totally agree with Mary75*, you must do what will work for you. Although my husband was ill for 12 years I only had to deal with dementia for the last 6-1/2. It is difficult for me to comprehend dealing with this for as long as you. When I placed my husband he could no longer use a phone. If he did want to call they would call from the nurse's station and put him on. I would encourage you to sit down with a pen and paper and list a minimum of 10 things that you can change TO MAKE IT EASIER FOR YOU. Forget what is best for him. Whatever is best for you will in the long run be best for him because you will be better able to cope because you will be taking care of yourself. You must do whatever you can to survive. Remember you want to SURVIVE. Except for the last month I only visited 2x a week. They told me that if I came too often that my husband would not learn to depend on the staff and will still be depending on me. It was hard but I did it to survive.
I think I just had an "aha" moment. I have not realized until just this very moment when i was reading your comments that I have not really even thought about taking care of me. This has been a long journey always trying to think of what would make HIS life easier. I am going to follow your advice and write down some things that I can change in my own patterns. I have been so used to being the caregiver that I have neglected myself. I can't figure out why I couldn't see that! I also think just dreading it every time the phone rings is something I can change as well. I am going to take paulc 's advice about the phone. For so long I was hoping that we could beat this disease. But I know that it will win no matter how many times I go visit. I guess I have found out something about myself tonight. Thank you.
Most of us have neglected ourselves, especially during the years when we're taking care of our spouses at home. But let's be honest here - the stress of caregiving (often with little or no help) and the need to meet other demands (like making a living) don't leave much time or energy for "taking care of ourselves," whatever that might be. Added to that are the psychological factors: the absence of hope, living in the land of insanity, the forced isolation (some people on this site describe themselves as being "a prisoner in my own home"); and giving up the things they enjoy doing. And I have not even mentioned the grief! Some folks probably come out of this experience better psychologically than others. Some people are more resilient than others, some have children and grandchildren who give them something to live for, and some might get a sense of satisfaction from using their excellent nursing skills. But for many of us, by the time we are released from this burden, we have forgotten what might make us happy or what we might want to live for.
One of the things I really identified with was Joan's April 17, 2015, blog, in which she described herself at the time her husband, Sid, was placed in LTC. She said, "I could barely stand; I was not sleeping; I was stressed to the point that I had stopped eating. I, who had always taken pride in my appearance, was a mess. My face was lined, my hair was hanging, my back was bent, and I was wearing ratty old clothes. My appearance was apparently so dreadful that relatives and friends could not hide their shock when they saw me. I got used to hearing, 'My God, you look awful. You can’t do this anymore. It’s killing you.' It wasn’t one event. It was an accumulation of too much caregiving that finally broke me." I think that describes a lot of us.
When people place their spouses in LTC, it's often the first chance they have to do anything for themselves, but they have spent so many years organizing their lives around their spouses' care that they often just keep doing that. dellmc53, I hope you are able to break out of that habit and start doing some things for yourself.
Not much to add here, as others have said it so well. But dellmc53, remember that it won't help him one bit if you drop down dead. As they say on the airline safety briefings: Put the oxygen mask on your own face first. Then you'll be better able to help those around you.
elizabeth, That's very true, but I have never found the promise of more caregiving to be a motivation for extending my life. When people tell me that I won't be able to take care of my husband if I am dead, it sounds as though they think that's all I am good for. I know they don't mean it to sound that way but that's how it comes out to me.
This morning, I had a hairdresser's appointment that was cancelled at the last minute. My first thought was that I would use the extra time to get some office work done (I'm self-employed), but then I thought, "Forget it! I'm going to treat myself to a few hours working in the garden." And then the phone rang again. My husband had run out of clean slacks. Could I come up to the veteran's home with some fresh ones? So now instead of a couple of hours in the garden, I'm folding laundry to bring up there. I am so tired of working all the time. If the whole point of "taking care of myself" is to extend my life so I can keep on taking care of my husband, why am I doing this? If I die, someone else will hold the oxygen mask to his face.
Oh Myrtle...I hear the same voice of exhaustion coming out of your thoughts. I think we are just so emotionally, physically, mentally and spiritually tired that everything seems overwhelming! The one thing that I have to hold onto is hope. No I am not hoping that he will get better; I have given up that hope. But I do not intend to give up my life for his. I cannot remember whose comment it was but early on someone on this website said "we didn't vow to die with our spouses when we got married." Somehow that stuck with me. Yes I love him so very much but I refuse to feel guilty for wanting my life to continue. When I said I wanted to run away I was not kidding. And when Charlotte said sounds like its time for a break I made a decision. I am taking a break. I am going to go on a short 4 day trip with my friend to Santa Fe. I just made that decision on the spur of the moment and have already had doubts about it but you know what..I am just going to do it anyway. It may save my life. I am going to get some oxygen for me. I think maybe you need to put yourself first for a while.
I didn't mean to stress so much that helping yourself first makes it easier for you to help other people. Let me re-state my post: You should put the oxygen mask on your own face first so you can stay alive and as healthy as possible to have a future life for yourself that is full of peace, joy, love, fulfillment, and all God's blessings.
(Yes, and sleep and rest are part of those blessings!)
dellmc, Go for it! I have heard that Santa Fe is spectacular. I hope you and your friend have a great time.
I am not physically exhausted but I AM mentally and emotionally exhausted. Specifically, I am sick and tired of dealing with negative stuff day in and day out, to the point that it crowds out any positive stuff. And every time I come up with something that might be fun, my plan gets squashed.
elizabeth, Sorry that I overreacted there. When I get a chance, I'm going to start a new discussion on the subject of guilt and motivation.
"When people tell me that I won't be able to take care of my husband if I am dead, it sounds as though they think that's all I am good for. I know they don't mean it to sound that way but that's how it comes out to me."
I assure you they don't mean that at all. Some people work very hard in caring for their spouse and die from the work. They won't let anyone help. They need to be reminded that their devoting themselves to caring for their spouse, and doing nothing for themselves, can kill them and thus not meet their own goal of caring for their spouse.
paulc, If people don't mean that, why do they talk to me as though I'm a one-dimensional person whose only goal is caring for my spouse? People who know me even a little know I have many interests. But all I hear is that I should try not to die because if I do, I will not be able to care for my husband. (A doctor said this to me just yesterday morning.) Or that I should put my oxygen mask on before I put his on, so when the plane crashes, I can take care of him. I love my husband dearly, I still enjoy his company, and I care about his welfare. But frankly, the thought of caring for him ad infinitum is not something that gets me all excited.
And why do people assume that the source of all my stress is caregiving? My work has always been demanding (I am besieged with deadlines) and is often unpleasant. But dementia has devastated our finances and my work helps to pay the bills. I don't see how I can quit yet.
I've had a lot of stress lately and have lost interest in a lot of things, but I don't think being stereotyped is going to help that. I guess I'll have to figure my way out of this depression on my own. All I can think is that I probably need some exercise and some fun. The first is doable; the second not so easy.
I had a friend say to me: "I imagine your biggest fear is that you die before your husband because then what would happen to him?" I made the appropriate social response but inside I was thinking "I don't care, I'll be dead."
I’m an appellate lawyer. Most of what I do is research and writing. When I argue a case in court, it's always to a panel of judges (not to a jury). I now concentrate on criminal defense. I started out in another area (business litigation) but a number of years ago, I narrowed my field and simplified my operation so I could take care of my husband. He has been in LTC for exactly one year, during which time I have tried to rebuild my business. Although I have plenty of work to do now, I have not been able to focus very well.
I know that in addition to being a nurse, you are a fiction writer and I envy you that. My own writing has always been constrained by craft-related conventions – I was a journalism teacher before I went into law – but I always wondered what it would be like to write creatively. (No jokes, please!)
Speaking of no jokes please. Eddie Murphy was always chided for taking the easy road in his acting. In one of them he played three roles and Arsenio Hall played two. There was a barber shop scene where six people were arguing about the greatest boxer ever but there were only three actors. At the very end of that movie after all of the credits have run, there is an easter egg. Eddie Murphy tells a joke.
https://www.youtube.com/watch?v=C31H3OULMmo
I don't know if that's creative writing. I do think Eddie Murphy was telling people he knew how to act so get off his case. In some ways I guess he was his own appellate there. I wouldn't know though. I've never appellated anyone.
Wow, an attorney. That's impressive. My s-i-l is in criminal defense, too. In terms of writing (and Alzheimers caregiving), the caregiving really undermined my ability to be creative or to write in any kind of semi-professional manner. I was able to keep doing my book reviews, which show up quarterly in Historical Novels Review under my maiden name, but that has been about it for the past couple of years. You would think that for people working at home (or trying to) that it shouldn't be that hard to do…it sounds easier than going out to work somewhere with an Alzheimers patient at home. Actually, I found the opposite to be true. It was easier to be productive by going out to work and hiring an aide to stay with Larry. Once I left the workforce to stay home and provide the care myself, any creative life went right down the tubes. My music suffered, too--not that I have much to offer there. I am just now, at the nine-month point, starting to feel like I might be getting back into gear again. (Lost another four pounds when I got on the scale this morning--Wahoo!)
The Alzheimers caregiving--having to be "on deck" constantly so to speak--with eyes in the back of your head, never really able to relax and think straight--is very distracting. I wrote a book when I was home with my little children in the 1970s, but I couldn't do it in 2013 and 2014, which were, as you all know, the two years in the Heartland that were pretty much lost to Alzheimers.
Wolf, as usual you are too deep for my simple mind. Glad to see you back on the website--you've been AWOL for a couple days. Hope all is well.
Myrtle, it takes a lot of time to regain the ability to concentrate after LTC placement, and I am sure also after loss by death. It has been almost 2 years for me and it is getting better but my concentration is not as good as it used to be. Nor my eyesight (eyesight will suffer from stress). You still have caregiver responsibility with LTC but a good LTC should lessen it.
Perhaps some people do mean caring for your husband is the only thing they think you should do (and this does reflect the bias of a woman's role) but I suspect many are simply concerned that you will wear yourself out caring for him and are trying to point that out.