Interesting article thinking about Secondary Traumatic Stress. When I worked in Child Protective Services way back in the 70s we frequently did a rotation between CPS and Adoption services. That helped a lot. The special CPS workers were eager to return after a relatively short stint with Adoptions. But this ... Alzheimer's situation. No rotation for that. I frequently think of it as a life sentence for two people ...neither of whom committed a crime. I scored low on Satisfaction and High on Burnout. No surprise there. But only average on the Secondary Traumatic Stress. That is surprising. Maybe we need another category. Ongoing Stress Disorder. I thought I would be off the charts. Recently went to my doctor to discuss the anti depressant. It's not working and I can't increase the dose of this one. Already tried that. She prescribed somethijng else to try with it. Will try starting that tomorrow. But worried about it. I am constantly irritible and angry. Keeping quiet and pretending to be ok is getting more and more difficult.
Thank you for the link. I read the article and did the survey, and then started looking for more information on this topic. (I particularly liked in the article when it said that compassion fatigue is treatable, but your physician needs to really hear you when you say you are a caregiver. Guess I'll have to work on speaking (much) louder, because so far most of my doctors really don't understand it at all. When I told one doctor I was a caregiver for a husband with dementia, he said, "Oh--you're a housewife". Not even close.)
In looking at other articles on this subject, I found a quote by L. R. Knost that seemed really good for caregivers: "Taking care of myself doesn't mean "me first". It means "me too".
In my case, I think I need to spend a lot more time and energy taking care of "me, too".
I didn't read the above article but I read parts of my journal yesterday, which I kept for almost 9 years. When I look back at what I went through I find it hard to believe I did not collapse from the stress. In some ways, alzheimers and dementia are harder on the caregiver than on the patient. My husband really didn't know what was happening to him. Oh, there were days when he knew something was wrong and he would ask, what is happening to us. But, for me having to pretend you're not angry when you are, walking away from an argument or fight, hearing hurtful words (which I had forgotten about until I re-read what I wrote) and not reacting to them, all of these things are extremely difficult to do, yet I did them.
I have now been told I could have post-traumatic stress disorder from everything I went through. In many ways, this is probably true. I've only been a widow for almost three months, so it is not impossible. You hold yourself together by a thread for so many years and when it finally ends, you go through another dementia phase.
Yes, you need to take care of yourselves. If only to get away for a few hours. I waited too long to do this, but when I did it felt so wonderful. I would go to a little village not too far away from where I live and sit outside with a. Up of co Free and a book, do a little window shopping and then have lunch. Oh my gosh, it felt wonderful. I wish I had done it sooner. It is truly a lifesaver.
Your comment on the Tam Cummings article lead me to sign up and join this board! I love what you said about "rotations". It actually inspires and might require its own blog post on our site.
I've only just discovered thealzheimerspouse.com, but look forward to digging in deeper and discovering this new trove of support and information.
I think we all are exhausted, whether or not we live with our spouse. My wife is in a memory center, gone mentally, but still here physically. I am very stressed out and worried, and scared-though I know what the end will be, but I still am extremely worried, having trouble coping. Worrying is very exhausting. thomp360
Thomp360, thanks for bringing up this thread again. I just read from the beginning. This started only 6 months ago. I read my comments and can't believe that wasn't about 6 years ago. I am much better at just being quiet and not reacting. Better.for me. Not so much for him. But I am having trouble caring. Last night I was such a bitch. Spent the day being nice to him. Finding things for him to watch on tv. Even sitting here watching a movie with him while researching some day trips we should try. Put on new shows that he normally likes but he went to bed. Yeah! I can watch what I want. 15 minutes, he is back downstairs. I convince him to go upstairs. Get him settled again. Reassure him I will com up soon. 20 minutes he is back. I was watching dancing with the stars. Soon as I hear him on the stairs I turn it off. Can't risk letting him watch that. So he sits there swiveling his head around. Doesn't like the light I have on. Jabbers a.bunch of nonsense words and says "That's what I'd like to do." I sat there stunned for a bit and then just said well I am NOT going to bed now and turned on my tablet. He eventually went back upstairs and stayed there. At first I felt guilty for not going to lay next to him. But then gave myself permission to take an hour off.
I am grateful hb does not expect me to go to bed when he does. Often he is watching the tv in the livingroom and I go to the bedroom cause I he doesn't like Star Trek and some others I watch. Some days I just can't watch another western or Walker, Texas Ranger or Family Feud.
You are not alone. There are many days I am so grouchy some days and I don't feel bad. I have gotten past that. He can't help what is happening to him and I don't want to be the perfect caregiver!
Thanks Charlotte. I made it to supper time today. But he stood there in my way watching me and turned on the tv in the kitchen. I hate that! Things were not going well.and I just lost it. Amazingly he left the kitchen and didn't come back. I am having another drink to try to calm down. But I am concerned about the drinking. Am trying to limit it. But I need some adult reward for making it to supper time each day. I don't know what to do. It was a fairly good day. I got a lot of work done outside. It was tough though. I think my blood sugar plummetted. Water did not fix the problem. Grapes helped but I was.still weak. Had to lay down on the floor for awhile. Went swimming even though water temp down to 70. Muscles feel ok now after supper. It wasn't very hot out there. So I don't know what happened. Feeling better now. Trying some of the new shows out. We'll see how this goes.
We might have talked about this already, but I'm wondering how much longer you can keep this up, bhv. I think you need to at least be seriously considering placement and looking around. It sounds like your own health is starting to be seriously impacted...and if something happens to you, then what is going to happen to him?
I wonder if your blood pressure went up from the stress? I forget, are you on an antidepressant? If so, maybe you need to increase it. If you don't want to do that try Serenity Formula that was recommended by someone years ago on this site. When I can afford it (which I should be able to now that I have my own SS), it is a nice addition to my low dose Wellbutrin.
I agree even though he is still able to function, placement might be needed in maybe an assisted living. He may fight you on it, hate you, etc. but you need it. I know our first thoughts are our spouse, but they are dying and unless you want this disease to take you too, you need to think of you more. I have no problem saying this because I know what happened to my MIL because she thought she could do it all - she died of a sudden heart attack and my FIL lived another 9 years.
Bhv, symptoms like yours may be trying to tell you something. Have you considered going to your MD and getting a complete workup? All of us caregivers are growing older faster because of the work we are doing, the hours that we are doing it, and the stress we are continuously under. And stress, as I found out by waking up to the fact that I was in hospital, doesn't just end when caregiving does.
I firmly believe that we need to take care of ourselves for our own sake because we are important. I always knew that should I get sick or injured, my partner would be cared for in a nursing home. We had, both of us, spent much of our lives caring for people in nursing homes. I just really truly wanted to do everything in my power to not get sick or injured for my own sake. And while I was able to provide my partner the care she needed at home, with, I may add, significantly more help than you have, I would have have placed her had I not been able to provide that care in a way that was safe for me both physically and emotionally.
Having said all that, how about let's meet at the cottage, start a little campfire and have s'mores and hot chocolate and listen to the cicadas. I am glad they did not disappear when the mosquitos were banished. :)
I am thinking of changing doctors, but just had complete blood.work to make sure I don't have the same cancer my youngest brother.just got diagnosed. I don't.have it. Everything else is in normal.range. I am only 63 and have building up my endurance all summer. Some people work outdoors for 8 hours doing manual.labor. I usually only manage 2 or 3. I think the fall.weather fooled me and I bet it was hotter than I thought. And I was at the end of a long project and got hard headed about finishing that section. Stupid, I know. I think my blood sugar level went low. Not high blood pressure because doing that digging and rearranging the landscape is a stress reducer. It is manual.labor, but also creative.labor. Also the fall allergens are more dangerous for me. I know we have talked about it before Elizabeth, but placement doesn't seem to be the best solution yet. From what I understand a memory care unit costs.around $9000 per month. DH is only 73 and in perfect robust physical health. My nurse friend says.it won't be 20 years longer, but I don't see any end in sight. What's to prevent this from going on for 30 years? I will think soon of hiring someone to come here and be with him while I go out. But he is ok alone for now. I went out with Patty for lunch and shopping for a few hours today and he was fine.
Charlotte, I am going to look for that thing you mentiond. I take celexa and can't increase that dose. Increase that and I am speeding with a.different personality. I tried Wellbutrin with the celexa but it was only nice for 2 weeks. Then dangerous.suicidal thoughts and nightmares. So sticking with low dose celexa.
BHV. If your bs plummeted you should have some juice or some peanut butter or a candy bar. Juice will work faster on a low. I completely agree we caregivers need to take care of ourselves! I’m still tired from all I’ve been through. Not sure when I’ll catch up on rest!
bvh, Allow me to repeat the best advice I ever got about having a spouse with this disease: "If you don't take control of the situation, it will take control of you." It sounds like this has already happened in your case. Your husband is running the show and you are reacting. Or, as I used to say of my situation, my husband was Pavlov and I was the dog.
I completely understand why you think that LTC is not suitable at this point, but there are other options. Your husband could go to adult day care several days a week, so he would be out of your hair for 6 hours. Since your husband is a veteran, the VA will pay for a couple of days per week of day care under its "Home and Community Based Services" benefit. (A vet can qualify for day care many reasons, including because their "caregiver is experiencing burden." There is no means test, although there might be a small co-pay, depending on your income.) I took advantage of this VA benefit for 3 years and Charlotte is using it now.
You could an also hire a home health aide to keep him busy at other times. I hired an aide to come in for 3 hours twice a week and it saved my sanity. I also took advantage of the VA benefit that pays for a certain number of visits per year from an aide.
Here is the link to the VA page: https://www.va.gov/GERIATRICS/Guide/LongTermCare/Home_and_Community_Based_Services.asp
Whatever you decide to do, you need to get out ahead of this thing.