Two things happened yesterday that changed my viewpoint on caregiving.
First, when DH's aide came, I barricaded myself in the bedroom. I was absolutely ready to snap, and didn't want any more stress of any kind for the few hours she was here. After a couple of hours of being up and down, and actually twitching with stress, I settled down and started to listen to music and write, and just sit alone with my thoughts. And in a very rare moment of clarity, I decided that it was not a good tribute to the marriage DH and I shared for decades to require myself to completely destroy myself to care for him. And it is destroying me, there's no doubt of that. Physically, mentally and emotionally, I am right at the breaking point. My health is taking a nosedive, and I've felt dead inside for so long that it almost feels normal to feel that way. I finally realized that I don't think it's right for one spouse to have to give up absolutely everything to take care of the other spouse. And I have given up everything: my health, my emotional well-being, visits with my family, any interests or activities of my own, along with every hope or dream I had for my own life.
Second, last night, when I took one of my "serious" painkillers, for when the pain is very bad, as it often is, I stood there with the bottle in my hand, and thought how very easy it would be to swallow the rest of the pills in the bottle, along with the one I had already taken. There was another moment of stunning clarity then, when I realized what direction that thinking was going. I've heard that this disease can also kill the caregiver, but I hadn't realized that this was one of the ways it can do that.
DH has been diagnosed for almost ten years now, and there were a lot of things to deal with for several years before that. We have no children, and no family close enough to help. For the first six years there was no help at all with caregiving. I even had the social worker at the Alzheimer's Association work on our case, and she couldn't find any help, either. Finally, when DH was 60, there was help available. A little help. But not enough help for one person to keep doing this indefinitely.
So I am finally, finally, giving myself permission to quit. My therapist has been advocating placement for months, but I just couldn't do it. I kept thinking if I just tried harder, or did things differently, or something—if I could just be a better caregiver--that I could keep doing it. And I finally realized that if I did continue, I would very likely die before my husband does. And I don't think my marriage vows require that level of sacrifice.
It will take a while to find a decent place, and to wait for a vacancy to occur. But at least there is a lifting of the burden, just with the idea that I won't still be doing this alone a year from now, or two or three years from now. Hopefully, I will have a little time to rest and regroup, and can be an advocate in his care—but not do it all myself. But for now, I feel like I have to take a step back to save my own life. It's terrible that it's come to that.
OH God Jan K I am so glad you have come to this, and I hope so much for placement in the best place soon! Dear sweet Jan K, it is really time and you see it. I too, am looking in to placement, his falling just continues and like you, there is just me, and always will be. Bless you for having the courage to let us know this.
I have no words. I am just so glad you are still with us here, I wish there was a way I could help.
I don't know why we think we are giving up or failing our LO when we place them. My God, we are only one person! How in the world is it failing when we can't care for our LO 24/7. A job that takes three shifts and many on staff at any other place they would be.
We need to change the thinking of the caregiver. Placement should not be looked at as giving up. It should be another tool in our tool box. The next step that some need to take. Home care, and then if needed, placement.
Placement should not be looked at as a failure!!!!! Jan K you are not giving up. My dear you have done all you can. ((((Hugs))))
Oh, Jan, I am so sorry, but you do need to save your own life! You have now realized this - before it's too late for you! You have done all you can - now, hopefully, placement will come quickly for him. Lots of HUGS!!
Dear Jan...what an emotional rollercoaster this journey is. Your not giving up...your doing what you need to do to save yourself, and get the care your DH needs. There comes a time when we know we just can't do it anymore.. ((hugs))
Jan K thank you for starting this thread & for being so bluntly honest! Just like it seems like we have a number of LO's pass away at the same time, we now have a few of us looking at placement NOW. I am doing it because of violent & aggressive behavior. After the hospital incident (on the other thread I started) I foolishly insinuated to my good friend that maybe he could stay home & she adamantly told me that, “NO HE CAN'T! It's time to place him.” Our 4 children also feel the same. I know that we shouldn't second guess our decision, but I agree with the statement that we feel that we have failed. One of my worries is that I won't be able to afford it, but I guess I will just have to figure it out. The most important thing right now is to take care of US (& that includes our spouses).
I had to look twice at your post to make sure I had not written it. My members tell me that so often my blogs say exactly what is in their heart and heads. Now it's my turn. Except for the 'no children' part (We have a son), I could have written your post word for word. Actually, I was thinking about writing either a blog or a message board post stating exactly what you did, but now I don't have to. You have done it for me.
One thing you did say that I had not thought about, but helped me tremendously was - " But at least there is a lifting of the burden, just with the idea that I won't still be doing this alone a year from now, or two or three years from now." The thought that I may not be doing this next year at this time IS a lifting of the burden and stress.
The emotional part of placement is going to be a horror, but at least I'll be alive to experience it, and hopefully, with the help of a good therapist, I will get through it. If Sid is not placed by the end of 2013, I fear that I will be placed - in the ground. Thank you. Thank you. Thank you for writing that entire post.
THANK YOU jAN K.your words will help many of us as we grapple with the decision"Placement or not". Some of our friends and neighbors have said"You won't ever place Sonny, will you?People have really no idea what we go thru as caregivers.Even our two adule children don't.But I know it will Have to be done.But will I be the villain for doing it? lIVING HERE IN THE Amish and Mennonite country it seems to be a cardinal sin to put a LO in a facility.
I too have come up against the wall or as runners say " hit the wall". On 11 Sept I had my first experience with migraine..I posted something on another thread about that. No headache, just the opthalmic migraine where you see the zigzag features...and a couple eventsl very short lived since. But on the 19th I started having these sensory sort of champaigne bubbly buzzy feelings in my face on the right side,a feeling of fullness in my head, a bit unsteady and lightheaded...then it went away..did all the checks for stroke...not that...whew....then this sensation left but a day or so was back. I called the doctor and got my physical moved up to a week ago today...it went well, was asymptomatic...bloods and DEXA came back with good news!! But then last Sunday the sensory stuff moved in again and I felt really unstable...just sort of outside myself..Got into my doctor on Monday. She saw me for an hour...put me on Lexapro which I'll start on Sunday ( have something on Sat so don't want to risk side effects) and while I was there had a Migraine..she gave me a cup of coffee( the best I have tasted in a long time) and after 2 sips the migraine was gone... Then yesterday saw the ENT, no the Meniere's is not moving in and he suggested, after listening to me, that it sounds like I have been hyperventilating for a long time...all the symptoms I described fit into this slot..Not knowing much about that I looked it up in my doctor books and low and behold the information about this feel into the section all about Anxiety and Panic Attacks, symptoms I could identify out of both sets of disorders...Wonderful...well at least I am not crazy.
I told my neighbor, I went over on Sunday last to boo hoo on someone's shoulder, that I could not do this any longer...and so my peer counselor is due back this weekend from a long holiday and I am going to get her to come over so we can figure out what areas would be most helpful and how to get it going.
Like Jan, I finally feel my quarter horse strength being challenged in a way that is not fair, especially in light of the fact that we do have 3 kids, two of whom live overseas and one on the other coast...and not one has come out this whole year to VOLUNTEER to help with their dad so I can have a break...by that I mean to the ones overseas are so busy planning trips to elsewhere over there on holidays rather than even THINK about using some travel bucks to come see dear ol dad. Oh and all 3 have said " if you think you have to place him, we understand and support it" well isn't that special....Better, I guess that they support it than would come here to fight it...but good grief...
So here I sit too, feeling like a broken down, over weight wreck who, like Jan, has not enjoyed anything I like to do in so long..I guess I'll have to get the manuals out on the cameras to refresh my memory on how to use them!!
Thing is, my DH is not the problem...he is easy going, causes no troubles other than resisits getting cleaned up etc....but he could be so much more difficult and he isn't. The IT is all the stuff that I need done that is so overwhelming...and some cannot wait...you know the house repairs, errands galore, get the truck tuned up, pay the bills well you all know the drill.
So while I start finding in home help I hope will work out for now, I'll have to start to look into the assisted living or NH facility prospects too for long term.
Jan, Mimi, everyone---Coming to the point of contemplating, actual arranging, or actually Placing your LO IS NOT QUITTING. Just as the Caregiver is the best tool in the Neuro-Psych Dr.'s toolbox for treating our LO, Placement is a major tool available in our toolbox. Some may not need to use it; some may not chose to use it; but if our circumstances warrant it, we would be irresponsible in not using it. The care our LO would receive would not be exactly the same as we would do it, but with 3 shifts of multiple workers providing that care,how could it be? There can come a time when the demands on the Caregiver become overwhelming physically, or mentally, or both. If we go down there will be no one to take care of either the LO or the Cargiver. Unfortunately, the decision is in our lap--just as all the others are. The Community which frowns down on Placement but does not help(even if you aren't of that group) has no say. The "friends"and relatives who say "No" or "we support you" but actually do nothing, have no say. Placement relieves the Caregiver of hours of hands-on, emotion wearing care. They will have time to rest; get paperwork done; be with their LO in an emotionally meaningful way; while they still have full say in their LO's care.
Placement is just another way to see that our LOs get the quality care they need.
Placing Lynn was the most unselfish thing I have ever done. It was also the most painful and difficult thing I have ever done. One only need to look through the old threads to see how it nearly destroyed me. But now I can truthfully say it was also the kindest thing I could have done for Lynn, and the best thing I could have done for both of us.
I understand, but still dislike how people see themselves as failure when they decide to place their loved ones. It is insane the ways we try to punish ourselves. And it borders insanity that one feels they must almost die before they can justify placing their loved one.
When did trying to get our loved ones the best care possible become a bad thing? It isn’t giving up! It is the ultimate gift of love. I think keeping them at home when you know you are burned out and simply not able to give them the care they need and deserve is far worse than placing our loved ones.
Don’t they deserve the best care possible? Lynn gets more social interaction than I do!! There is live music shows all the time, he just loves them! Every day there is something going on. He gets daily PT, restorative and occupational therapy. He gets 3 shifts of nurses and aides to assure he is safe and getting the care he needs. (There is no way I could have given him all that attention and care alone at home)….And he gets me, who still loves him deeply and visits with him daily.
Is it kinder to let them sit home and sleep away their life with little stimulation and interaction? I just don’t think it is. Lynn wouldn’t know if he was home, in fact he thinks he is. I am no longer burned out and stressed to the max. Now that I am “only” his wife and best friend again, I can now make Lynn’s happiness my only priority. I just couldn’t do that for him when I was bogged down with the day to day care.
The time we have now is just so so precious. He is so happy and content!! For me, I can truthfully say I am a much better and more loving caregiver now. Just because you place them, it doesn’t mean you aren’t “in charge” of their care. Your “job” is far from over, your roles will just change. I am very much involved, I take my job as his advocate just as seriously as I do our vows.
I wish we could all just cut ourselves some damn slack and stop thinking of placement as a bad thing. I just don’t see how trying to assure our loved ones get the best care possible ever became a negative.
Jan, I am glad you were able to see clearly through your pain. It will be so very difficult, but I hope it will also be the blessing it has been for us.
Mimi, like you I was starting to have the migraines with the zigzags (never had migraines in my life), was hyperventilating, thought I was having heart problems, etc. Finally ended up in the emergency room and that was where I decided it was time to find a place for my DH or I was going to be the one in a nursing home. He is now in a facility and while there are still issues to deal with, I feel like a new person. Health problems have alleviated and I feel like I have some of my life back. Plus I feel pleasure in wanting to visit him instead of wanting to kill him all the time!
Jan K, Thank you for your honesty. I too am happy that you are still with us. This is a testimate to the fact that you are now at your wits end, and honey you need a break. Can you get some respite for a few days? Please contact your clergy for some help. They should be able to help you set up the respite as well as give you some relaxation away from your home for a few days. You have voiced what we have all thought at least one time on this journey, "it would be so easy to put an end to all this." I have often wondered if anyone keeps statistics on the number of murder/suicides that are related to AD caregiving. Please, try to get some help until the placement occurs. hugs around you .
We call ourselves caregivers but a better title might be care providers. Our duty isn't necessarily to be a caregiver but rather to see to it that our spouses receive the best care we can manage for them to receive. We may not be able to provide the best care personally. I know there will come a point where I will not be able to provide the same quality of care a facility would be able to. I haven't reached that point yet but I will no doubt. Being able to recognize that is part of providing that care and part of being a good caregiver. That time will come for almost all of us at some point. Does that mean we have failed in our duty to our spouse. Absolutely not. What it does mean is by placing them in a facility to provide the quality of care they will need from then on we will have continued to carry out our duty to our spouses.
So be assured you have not failed. You have met your challenge, Provided the best of care for your loved one, and without a doubt you have succeeded.
Jan I really understand your feelings of futility that drove you to contemplate taking your own life. After all, what is there to look forward to but more of the same? I just went through a medical emergency that came close to taking my life. I remember clearly asking the Lord to take me that night, I was ready to go to Paradise. And, then after I came home, still had lingering depression. One day when I was really having a full blown "pity party", I clearly heard the Lord say to me "Trust Me". Guess I got that message alright. I haven't even been at this as long as most of you, but I clearly feel the desperation of losing yourself as you watch your lo lose himself to this disease. No sense at all to let this horrible killer take both partners.
I pray that this placement happens quickly and seamlessly for you and you can do as Nikki has done. Go back to giving your dh the best care and love possible. Much of the loving feelings that we have all felt ourselves subordinating to the stress of this job will return when the pressure of daily care is removed. God bless you, Jan, I will keep you in my prayers.