I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. My thoughts on how I think I should be behaving as a caregiver to the man I have loved for 2/3 of my life. If you are better at this than I am, please tell me how you do it.
Joan, I am not better at caregiving than you. I suspect you are doing better than me. If I didn't work and have hired help during the day I think I would have been in a straight jacket by now.
This is something that none of us wishes for ourselves or our spouses. For the vast majority of us who aren't saints, this is a lot of work that we don't want to do, no matter how much we love our spouses. The amount of stress is overwhelming. Plus you are also looking after your father. I'm thankful that I didn't have to deal with my father and my wife at the same time (well, actually I did but this was before her dx and she was working and were still equal partners).
One of the biggest benefits I have read of LTC is the opportunity to be a spouse again. By not being on call 24/7 I hope you will begin to get some joy from being with Sid once again.
None of us can do this 24/7 forever. We all get tired, we all fall down on the job. No one is built to take this 24/7 forever. No matter how much we love our spouse. We are only one person. And we get sick, tired, worn out and over worked.
None of us are the better caregiver. We are just the best caregiver we can be for our LO.
Truth be told we all need help, and we needed it years ago. Sadly it is just not there for most of us.
I think we all pretty much know how we maybe "should" be behaving as a caregiver, but I don't think it's practical. We still have feelings, emotions, health concerns, and on and on, which all affect how we feel or act in a given moment. Most of the time, I feel like I can keep doing this for the duration....then, something happens with him...at the wrong moment for me...and then for that moment, I know I can't keep doing this forever.
You have been and are a great caregiver, Joan. You are human, too.
Such a toll this horrible illness takes on all of us. Those dealing with EOAD and those of us in for the long duration, it all just sucks so bad. To only 'KNOW' how long it is going to last would at least give us a mindset on whether we could endure the trip, but that can't happen yet. That alone would ease my pain and help me endure, and help as much as I am able. Maybe that is what some of the research should determine. Help the caregiver in some way, anyway. Yep, we read and prepare ourselves for what is to come, yet our partner has their unique spin, of course. A month seems like a year, as years seems...well, you get it. We feel somewhat prepared, and are blindsided by the next event. Plateau, decline, then worse, then long plateau, then.....again with the 'you get it'. The disease is one thing, but the life of the caregiver is strategic. Not only does it save the government a ton (which you would think they would act on), but it plays the biggest role in Alzheimer's. If we are sick, if we are without sleep, just exhausted, need to deal with family matters, (the list is infinite), we become weaker by the moment and unable to 'care', in more ways than one, especially for ourselves. We are only humans, and can only do so much. At some point, survival instincts rattle in our brain, and we sadly deal with the 'selfish or not' stuff in there too. Such craziness, but it all comes down to how long it will last. No help there! So, stop, regroup, and maybe think, I've done this much, and maybe we should at least give the alternative a shot for awhile. Maybe you will have a clearer mind and a healthier self if you need to change your mind. My best to you! Over and over!!
Joan, your blog reminds me of my background with my wife of 51 years. We also fell in love at first sight. We have had a happy marriage to this very day. That being said, there has been stresses along our journey but none that were overwhelming because we never stopped talking, reasoning, compromising. She is now at a stage approaching or equal to Sid's. Talking, reasoning and compromising are no longer as easy as they were over the past years. You have shown a dogged commitment out of love and respect for a man who through no fault on anyone's part now has a dimenting brain injury. As you no doubt are well aware, many like marriages have failed early after the troubled started. Does the fact that you are tired of being in your situation mean your marriage is now a failure? I think not. I realize that this forum is not a place to discuss religion and you may not want to post this, and that is OK. It is meant for you personally. I am reminded of a principle that can be applied to both our situations in a comment by a Hebrew apostle of Jesus Christ that indicates that it's OK to do what is right even if you don't like it: - (1 Corinthians 9:17) . . .If I perform this willingly, I have a reward; but if I do it against my will, all the same I have a stewardship entrusted to me. Vieu Corbeau
Joan, I don't comment as much as everyone else, but I feel this connection to you in the way we handle our emotions through this. I could have written your blog. I should also be a better caregiver, but I can't either. I ENVY the CG who can say in their minds “it's the disease, not him/her” & go on & be the loving caring caregiver. I CAN'T! At this point in time my DH is very agitated & angry & he doesn't comprehend what I am trying to tell him. I now know what it feels like to be an emotionally abused wife. (& I can tell you if he treated me this way & he didn't have AD, I'd be outa here!) I will write what is going on in my life on another thread (because I need some advice), but I just wanted you to know that I feel your pain & I think that the 3 shifts of nurses might be in our life sooner then I thought.
Joan, I haven't been on site much since dick passed away, however, I have been thinking of you, and of how marvelous this site was for me while I cared for him. You are a woman, a human being, and you need time out. i suggested to you previously day care. it was my lifesaver. If there is no day care available, get some sort of respite. i assume you still have your father also. You need to have someone else take over, like when you broke your arm and your sister came. you need a rest, and a recharge. Maybe one of those caregiver cruises, but you do need some rest. think about getting help. I know dick would not hear of it, but he did go to day care. and then Of course, i had to place him. and maybe that's the final answer for you. It's amazing how sweet and agreeable you can be when you only have to do it for a few hours and then you can go home. We've all been there Joan, give yourself the same break you would give someone else.
Right on bluedaze. We all do our best and each spouse is different just as each caregiver is different. Joan you have more on your plate then many of us and I always wondered how you managed to do so much. You don't need flogging from yourself or anyone else. You need and deserve all the praise there is for providing this wonderful blog even if you never did any caregiving. How you do it all, I will never understand.
Sounds like it might be respite time. Hang in there and take care of yourself.
Joan, as Judith wrote, we are all different, some can take on more than others and do it for a lot longer. You are amazing, at how much you do, don't beat your self up at whether you should be a more willing CG, you do it the best way you can and know how, day by day.
I have watched the nurses in the home struggle and sigh at times when I think it gets to them too, and they get to knock off and walk away from it all after their shift is over in a few hours...so how are we meant to keep going 24/7, working all three shifts everyday, and be a more willing CG
DH has been in a N/H for 2 months now, it's more like 2 years for me and there are times I wish I had kept him home longer. In these 2 months he has declined so much, I am wishing I had been a more willing CG...perhaps he would not have declined so much, is it being there, all the meds..or would it have happened anyway?
We have to stop being our own worst enemies. Our vocabulary has to stop including the word ”should”. That word and its meaning are a pure fantasy, pie-in -the-sky, unrealistic, concept we’re trying to apply to a hard reality. Every person who takes on the job of Caregiver of a Dementia affected person, has no clue as to what they’ll face or for how long—but they take it on anyway. Of all diseases, the Dementias are, I believe, the most destructive. They not only attack and destroy their actual victim, they destroy any relationships the victim had and generally cause very serious harm to the Caregiver. As Dementia Caregivers we are doing our best every minute of every day. Our own human qualities may occasionally falter, but we stay with it. We may have to change strategies but we don’t just walk out the door. With as many worries over behaviors and meds; Dr. visits and progression, and all the 1,000 and one other things we have to oversee, why we have to flagellate ourselves over doing the job well enough is self-defeating. We took on the job willingly. We continue to do it, as long as it takes,----- willingly. We may modify how we do it; but we don’t quit. That’s doing it as well as possible---willingly, and that’s as good as it can ever be.
Falling in love, wanting to be and do things with your beloved companion, life together...these are all the impulses and inclinations of a vibrant, alive person seeking to do vibrant, alive things. 24/7 caregiving doesn't often feed vibrant aliveness. It starts to wither, and we feel crazy and half-dead. There's nothing "wrong" with that picture, it's just the way it works. How much you love and have loved the person who needs the care doesn't have much to do with whether this is a sustainable activity.
A truly great story. Knowing when you were ten and still feeling that way at sixteen and then twenty one and then having him fall in love with you and spending much of your lives together.
I feel for that little girl who has spent 10 years giving while her own dreams fall apart, caring for two at the same time, advocating for Alzheimers at the same time, providing comfort to others at the same time and it is so terribly sad to watch that so much is given there isn't hardly a drop of empathy left for herself.
Well here, you can share mine. I admire you. I don't care that you're short tempered or resentful about moving a mountain uphill. It doesn't lessen my opinion of you that you're more honest than many and are willing to be so publicly in case it helps anyone else with their frustrations.
Now you take that ten year old out for a treat and you be nice to her. She has feelings too. And to be honest I'm depending on her too way up here in Iceland. I mean Canada.
Awww! That was a good ol 'hug' Wolf. I have no doubt we all feel the same, and could go on and on with our reasons of being proud of her and so very grateful to this most wonderful giving friend, whom we all hold with highest esteem. She has helped more of us than she knows. So that you don't get the only hug, I just gotta say, from all of us.......(((((GROUP HUG TO JOAN)))))). …...and thank you!.
I think Emily has raised an excellent point--about whether how much you love the person is relevant to whether it's a sustainable activity. We should examine this further. It occurred to me, that when we moved my Dad from an independent apartment to an ALF at 94, I didn't have the fears, misgivings and doubts that I had when I placed Steve. It was a practical matter--I would have liked to move him to my home, but that was impossible because of caring for Steve. I loved my Dad, but because it was a parent/child relationship, it was much easier emotionally to accept that transition to a facility. It seemed to be the natural order of things. When the person who needs care is a spouse, however, it is common to feel guilt or blame ourselves for not doing more.
It is uncanny, Joan, how often you tap into what so many of us are feeling. I couldn't take the 24/7 anymore andlast month Clare started going to a day care program 2x/week, giving me some badly needed four hour blocks of 'me time.' And since we are fortunate to have LTC insurance, somewhere down the line Clare will go into an ALF. No man loves his wife more than I love Clare. We have had a fairy tale marriage now into its 46th year. But I also know my limits as well. Clare has been 'fighting me' on that 2nd day care placement, but I must do it both to maintain my sanity and to easse some of my daily stress. Placing her in those day care programs has made me less frustrated so I don't take out my frustrations on Clare as often. That's how I rationalize what I did ... and it is true.
Wolf – you always write so......eloquently, but that post to Joan.........well it brought tears to my eyes.
janny, count me in on that ((((GROUP HUG)))) to Joan!
emily & marilyn, your posts really gave me some peace, in that it helped me realize that I am doing the best I can & if/when it comes time to place my DH it won't be because I gave up, it's because it will be the right thing to do.
acvann, you are so fortunate that Clare goes to day care. My DH won't, but that doesn't mean that I will stop trying. As he declines I will try again. I'm sure that it does ease your stress.
Joan, I am so glad you are writing again. You always touch my heart. I read and reread your column and read and reread all the comments and then cried and well I am not willingly doing this caregiving... sometimes I feel like I am crying and screaming and digging my heels in while I am being dragged on this hideous journey. That is in my mind, to my dh I try to be kind and patient. Then there are the times when I come home after spending hours trying to troubleshoot various problems with maintaining properties we own and I vent to him and he asks me tell me again what the problem was.... or he will say some sarcastic remark and I am so tired I snap and tell him if he is not going to help me with the problems he can at least not demean me or put down my efforts...I know I know.... I know but thank you for being you and caring enough to share here.
grendelsma2, you said it!! None of us are willingly doing this. None of us would have ever chosen this. It is just what life has handed us and we try to deal with it with grace and dignity. I never tell myself I can't do it anymore (hardly ever) because I have no choice. I don't fret and worry about things over which I have no control because it is useless and nonproductive. It is what it is. I am grateful that he was my best friend and that we loved each other unconditionally and that I really liked him. I cannot imagine doing this for someone I did not have deep loving feelings for. Lloyd is getting worse rapidly now. I need to tell him to chew his food and to swallow it. He seems agitated and hardly ever stops pacing or just standing around looking like he is lost. He comprehends next to nothing. He thrives on physical contact and affection which I am more than happy to give him for as long as I can. Most of his meds have been converted over to liquids. Rubbing his back or stroking his hair seem to give some comfort. I can envision the day that nothing will get done around here anymore because he needs constant comfort and attention. I don't mind. The housework will be here long after he is gone. I am resigned to the simple fact that he will die and sometimes I wish for it to end his torment. I know that he knows on a lucid day that he is doomed and I pray that my being here will give him some peace and ease as he drifts from this world to the next. I HATE THIS DISEASE!!!
I agree with Marylin that Emily has said the important thing to understand and in my opinion it's right here:
"How much you love and have loved the person who needs the care doesn't have much to do with whether this is a sustainable activity."
Carol has pointed out we help them willingly. And in my opinion that's another aspect that links in.
We willingly take on an unsustainable activity. Almost no one dies from facing this hopeless horror; but, almost no one walks off this field quoting Emily again "vibrant".
My behaviour was inexcusable at times. I've admitted that before but it belongs on this thread. I had tantrums at times that my neighbours certainly heard. And at times my frustrations weren't about something she did or didn't do, they were about me. Imagine my nerve assuming I had that right.
And now that my wife is in a NH, among all the rest of the nightmare things this does to a healthy, vibrant human being, I have to kick my thoughts that I was inadequate; that I screwed up; that I did this wrong; that I wish I hadn't done that.
And the reason I have to do that is because I'm just sane enough still to understand that the wars I fought for us which others commend means that my head being full of these thoughts is what's insane. Another place where the damage of suffering through this comes out.
Well that's wrong. As Carol said, everyone who didn't walk out that door gave willingly. And that is an excellent thing to do in life for someone. It just is.
Joan,don't ever doubt that you give Sid and your Dad the best care. We all at some time or the other feel angry at what life has dealt us.And it has dealt you more than most of us.We just gotta keep pluggin' along.You are No. ONE in my book.
One of the men (who has dementia) in our support group said once, "It is what it is." Often now others say it, but don't know whether it's meaningful to them. That became a mantra. Now that I'm alone, I continue to repeat it and move on.
I didn't have outburts mostly because I was afraid of that. But what I did was grow distant. Sure, I provided the food, and did the laundry and the meds and always tried to go about the day with platitudes. But they became just that. The smiles, the good wishes, the "sweet dreams", the "I love you". Not that I did not wish him these things but that as he withdrew so did I.
Joan, when I first saw my husband, it was about three months before we married. I had said, hopefully, a forever goodbye to the man I loved for years. He was my soulmate but I was not his. My husband took my breath away and I thought there could be a happily ever after.
Who can say why our dreams appear, flourish, and then fade? I applaud you for everything you have done and continue to do!
I read your blog and realized that you like all the other people on this earth are just simply and first of all a human. Every emotion you mention is just truth plain and simple. We do everything we do simply because of who we are and what we believe in. Comparing ourselves to others life walk only encourages or discourages us depending on how we connect with it. We are all human but wired differently and that is why we need each other. If we edify and do not judge only then can we truly support each other. Love is a choice we make and it is that choice that makes each of us different. Never be afraid to just be yourself. Those that love you as you are will stay and those who do not your are better off without. God bless you and I pray that you will follow the path you feel comfortable following no matter who agrees or disagrees with you for it is YOUR path to walk and no one else HAS to follow you for we all make our own choice in life.
Joan as I read your blogs, I can see the revelations, the hope, and then the stress takes over again and the sadness. How could that not be.? It does not keep a steady course.
And like Blue said, it is so sad when her mate does not squeeze her hand back, and as much as you love Sid, I imagine he too cannot squeeze your hand back, or return the hugs. (It is a strange thing when they do not hug back)
It seems so easy to forget, and we have only been on this journey 2 years, the couple we used to be, as AZ takes over every facet it seems to fade out the reality that yes, we were a "regular" couple at one time. I can barely remember how it used to be.
Your heart is sore dear Joan, for that I am sorry.
Thanks everyone for your comments. Everyone made valid points, but the one that I think says it all for me is Emily's - "How much you love and have loved the person who needs the care doesn't have much to do with whether this is a sustainable activity."
That's the point - this is not a sustainable activity for me anymore. It's killing me. Last night's hour and a half poop patrol nightmare did me in. And today, my sister-in-law read me the riot act. We haven't seen each other in 2 years (she lives in RI), but she said that she reads my website and my blogs, and I had better take the advice I give to everyone else and look into placement.
My father first. He has maxed out of Assisted Living and needs a nursing home, so I have to get that taken care of first. When I return from my Thanksgiving trip, I will talk to my case manager and see what we do about Sid. I'm desperately trying not to think of the emotional component involved in that. I have enough to deal with right now. If I go down that road, I'll be so hysterical, they'll have to place me. I'll deal with that when I have to. Not now.
From what everyone who has placed a LO has stated. It seems they are able to become better caregivers, in that they now have a staff who works full time with their LO. And they now have the time and energy to do what they were unable to do, to give them the best care without being overworked and stressed to the max.
Take it one day at a time. You are not giving up on Sid. You are doing your best to give him the best you can.
Joan---Somewhere in a corner of your mind hold on to what many of us found about placemernt. After the initial days, our LO s settled in; while care wasn't the same, it was good; and pressure on us was reduced.As a result,we could regain some of the closeness we'd thought gone forever. It is not abdication. You're not doing or allowing it to be done to your LO. You are seeing that he gets the best care you can provide; and at the same time lookng out for yourself so you can continue to see that he has quality care.
I've said it before and I'm saying it again. There is no need for the monster to claim the caregivers, too. Everyone has different lines in the sand and have no need to be second guessed. Guilt should no longer be in your vacabulary. Sadness is another matter.
I think Joan has a special kind of ESP. Somehow she knows just the topic we are all enuring right at the time she writes her newest missive...
I don't know how she does all she does and has time for all the fabulous knitting she does..my god...I am just getting the seed stitch and purl down pat...lessons...yes lessons by Joan would be a dream...
but back to the topic...yes Joan has just the knack for knowing just the right subject and somehow so often so many of us are on that same base at the same time...
I wonder how to even go about placing my husband, what if he doesn't want to go, then what? I can't make him go into a facility "just to save my life", can I? My husband is not in as bad shape as Sid and, I suspect, many of you others spouses. He still dresses himself, can make himself a bowl of cereal, nuke his coffee, take a shower by himself (although he usually doesn't want to shower). I think I would have a very difficult time convincing him to ever go into a facility.
Joan, it IS amazing, isn't it, how we can sometimes advise others so easily but then seem unable to take our own advice ... even when it is so clear to us that it is necessary to do so?! Just a few days agoon this thread I posted how I've placed Clare in day care 2x/week. Well, just yesterday I made the decision to up that to 3x/week starting in October. Maybe it's my way of 'transitioning' to make the decision easier for me when the time comes for me to place Clare in an ALF. But I also think it's recognition of what I tell others in my support group ... that THEY need respite time for themselves because, as you have written, one can sustain a certain kind of life for just so long. And if we as caregivers go down, then we are no good to our spouses or ourselves and that would just make things work. So, as someone who admires you from a distance, I am happy that you have made the decision to ease some of your daily stress, at least with your dad. As for what you need to do with Sid, you must do what you must do, and only when you are ready to do so. I just hope that you take your own advice to us and not let your situation with Sid get to the point where you irreparably damage your physical health. WILL it be emotionally gut wrenching for you? Of course. But you must do what you must do to maintain your own physical health, Joan, as well as doing what is best for Sid. We're all here to support you in whatever decision you make.
Unlike 4 years ago, when Sid was raging, out of control, and verbally abusive, he is now sweet and loving. He tells me all of the time how much he appreciates me and how much he loves me. I get hugs and kisses every day, as well as apologies - "I'm sorry I'm putting you through this."
If it were just the AD, there would be no need for placement, as he is aware of his surroundings, is very social, shaves, dresses, brushes his teeth, and eats independently. The problem is the physical. He is "this close" to not being able to walk at all. He cannot get in and out of the shower without maximum assistance (Medicaid is paying for a CNA to come twice a week for that). Although he knows HOW to dress himself, it is a monumental chore for him. He cannot get into or out of the car without maximum pain and effort. It does no good to help him lift his legs, because it hurts him too much. He prefers to take forever and do it himself, as he knows which movements cause the most pain. He cannot stand independently. He cannot get in and out of a chair without maximum assistance.(Yes, he has a lift chair, but we do go out to restaurants, other peoples’ houses, other places) He has to sit in his wheelchair now when we go somewhere. His hands are very weak, making it difficult for him to do anything. He cannot even hang up a shirt. So, I’m waiting on him non-stop. He sits; I do everything for him. I do everything for me. I do everything for us. I am exhausted all of the time to the point that on some of his DC days, when I am supposed to be working on my knitting site to try to generate some income, I fall back into bed and sleep.
And then there are the emergencies, like 2 nights ago. This was my line in the sand. Poop patrol in 3 different rooms is bad enough, but when I can’t get him into the shower because he can’t step down the 2 inches, and he can’t move his feet, it’s time to throw in the towel. As I am writing this, I am waiting for the washing machine to finish its cycle. After I washed what clothes were salvageable, I am now washing and bleaching the machine itself with no clothes in it. Never mind that I was drop dead tired after all of this, and it wasn’t the first time it happened, he was humiliated him and he couldn’t stop thanking me and apologizing. Broke my heart. In a few days, he will forget it ever happened. He has no memory of the last time. He has no memory of his previously vile, abusive behavior. He has no memory of much of anything.
I am seriously worried about having a heart attack or stroke or dying from exhaustion – that is the reason I will be looking into placement. That, and 3 relatives yelling at me that they don't want me to die.
The worst thing I ever did to anybody was place my wife into a NH. Nine months later I'm more reconciled but it's still and I hope remains the worst thing I ever had to do to someone. I read here years ago already that's the worst day of your life and for me that is true. I also agree with the other thing I've heard the most about this which is that everyone waits too long.
In Ontario we have a system of case managers. When you get diagnosed you get a case manager assigned to you who evaluates what you need at your stage. While opinion of this system varies with how good the case manager is and what decisions they make, they used two terms I think are relevant and everyone has probably heard.
One is caregiver burnout. I heard stories of caregivers who themselves ended up in hospital because the increasing demands of caregiving under personal duress (that's every single one of us) can become too much of a load without the caregiver understanding that. And since every single caregiver has a huge load that increases while they get stretched - how are you supposed to self diagnose that?
That's only the practical side of that point. The human side is how are you supposed to authorize yourself to "give up". Which it isn't but that's how it feels. You could have ten relatives shaking you that they think the time is here; but, it's only you that can say it is and that is a very, very hard thing to do.
The second term they used was 'crisis placement' which means the caregiver is in crisis not the patient. What became clear was that any of the professionals around you could try to persuade you; but, they couldn't legally activate anything themselves. And to this day I know what happened. I would have stubbornly held on to my wife who honestly had no idea anymore where she was except that the respite center said no one would take her in her present state (she touched other residents and literally that's what it was and they sometimes reacted) and that made me realize I couldn't go on so right there in that meeting I said I was in crisis, all talking stopped and I began signing forms my case manager had brought and she never came home again.
At that time I had no emotional or rational capability to assess anything reasonably. I can't believe that Joan or anyone else after years of caregiving and then coming to such a decision would have objectivity here either.
My worry about Joan who I understand a bit better because of reading so many blogs is that she will be harsh on herself. Perhaps I'm wrong there. What I do know is that after they do go there in a way that is different from when they die, you go through serious emotional and mental things.
It's different because we didn't decide they should pass - but we did decide they should go there. And that does things inside you which come out because once this load really is relieved, pieces of your own emotions and feelings begin coming out depending on your state which don't while you have them. And while you do begin grieving, it is like a hybrid grieving because that final reality is yet to come.
My belief is that no single fact will make you do it. You must come to a point which some people say is when you're ready; but, I think that is cow flops. You come to a point. That is all.
Final point on 'caregiver burnout'. Their argument was twofold. They didn't want you to burn out, but they also knew you were no good to anyone after you did.
Joan, as you know my MIL died of a massive heart attack - I believe because she refused help. She catered to my FIL - car rides all the time, had him tracing, doing things to keep his mind active - to the point of ignoring herself. She thought she had the flu, ignored my BIL to go see the doctor until one day she keeled over. MY FIL somehow knew to go get neighbors but it was too late to help her.
Do you want that to happen? I don't think you want Sid to be sitting there yelling for you when you can't help him and in a panic not knowing what to do. We are all in agreement here that the biggest help for Sid will be placement sooner rather than later. I do not think I am alone here when we don't hear from you unless we know you are gone, we all worry something has happened to you.
We all hope that if out LO needs placement that they won't be aware of the change. So I realize that placing Sid with his current awareness must make it extra hard on you. But his care has become too great for you.
Charlotte, I think that was such a brave and honest thing for you to say. Sometimes I think it has to be said, and with backbone. We do love you Joan.
Somebody brought up the blame we give ourselves, for their disease. Today, he was trying to get in the car, and now, he always tries to open the door before he has gone far enough past it, and he opens it on himself. He gets stuck on the edge of the door and can't move. Just the last time on the way home, when he did it as I was trying to help him, he gasped and sobbed it was just too $%%!! much.
So as to the title of this thread, instead of thinking I was a good and loving caregiver as we drove home, I sobbed and choked and thought of ways to blame myself. WHAT IS WRONG WITH US?????
WHY ? WHY is it so hard to accept and do?
and Wolf, I am in such a shaky situation with placing or not placing Dado, your words helped so much.
We have to hold on to each other here, and others that truly know.
When we took on Caregiving our LOs I doubt any one of us had a clue what would be demanded of us. The Dementias are the most destructive diseases I can think of , stealing everything—literally everything from our LOs , and further, they demand we deal with all that loss, take care of all the cleaning and fixing, the financial and legal, and the medical care for our LOs, taking responsibility for all the decisions. In the process of destroying our LOs, they will take us too if we let them.
We really have to let go of some wrong thinking. At any, and every point when we have to make a decision or take an action for our LO’s best care, that decision is for their care. The reason for the decision is the Disease. Not our responsibility—we are not doing it to them. The farther down the Dementia Road we travel, the worse the choices become, until there is no good/bad choice, only a choice of degree of bad choice to determine.
If you’ve had the discussion about end of life wishes, those decisions have been made, but you still have the choice to honor them. That’s not so easy either.
Long ago I made up my mind to do the job, the best I could for my DH. In our case VaD made the damage. VA created the choices. I did my best to choose the best choice available. When it became apparent he required Placement I did all I could to make it happen. Circumstances intervened. A second terminal illness presented itself. In a healthy, non-demented individual open heart surgery would have fixed the problem. I had to agree he not have it. He wanted no extraordinary measures, a DNR. The Dr. expected us to have about another year, but said when it was his time; he would go quietly and peacefully, just slipping away. We only had one more month.
I didn’t make any of this happen. I did all I could to make his life as good as possible while the Disease ravaged him. Until there are effective treatments and cures, these diseases are responsible for all the harm. Nothing we do, comes from us causing this. Everything we do is to provide the best care we can. And at the end, the Dementia will take them, but we can survive and live as fully as possible as a kind of honor to them.
But that can only happen if we keep our heads straight and lay the faults at the right door. They belong to the Diseases. There is no guilt in enlisting help or taking respite. We do our best and that is good enough.
joan its good to hear you are making the decision before crisis happens again. yes it will be painful to place your dear Sid in his present awareness but he will adjust as we see here so often. he may even enjoy the company and activities afforded and that will allow you the benefit of your early decision making. yes we know just how stressful those poop patrols can be especially with a non cooperative spouse. its a line in the sand for so many. physical or mental it doesnt matter -we do what we have to to sustain and come out on the other side at some point. best of luck. divvi
Joan and all other caregivers -- You are doing the very best you can in the moment given what you know at the time and where you are mentally (ie totally stressed). Keep telling yourself, I would NEVER do anything other than my very best (and maybe it isn't very good sometimes, yet it is the best that I can do in the moment)
I picked this up on a call-in radio show years ago and used it to help our adopted daughter understand the loss of her "birth mother". I sent this to friends who lost a child through suicide. I am it to myself (when I remember to). Hindsight is great (ahh, I should've, would've, could've) but even though you can look back at yesterday and say to yourself (ahh, I shouldn't have), the reality is that you did what you did, and you were doing your very best (yeah, I go back all the time and judge my actions -- and do better in the future). Accept that we are human and not perfect (ahh, if we were perfect we could skip this step and take our place immediately with the angels). Hang in there.
I totally agree with many of the feelings expressed with caregiving. My husband was diagnosed in 2008 but have noticed symptoms before that. For the first 2-3 years I was angry, resentful and finally went on medication for a year. Now I am not as angry but I can see that this disease is slowly wearing me down. I am starting to hire caregivers to come in so I can take a day here and a day there. He recently fainted during a church surface and was found to have a critically low sodium level. He was in the hospital for 4 days and I got the okay to send him to rehab for 3 days so I could have more time. Of course traveling back and forth to the hospital was no fun but just having to care for myself was such a luxury I almost forgot how wonderful it is. I do not want to place my husband but am realizing that I probably will. I decided that over the winter I will take another step and visit a couple LTC homes to get a feel for what I will have to do.
Joan, you spoke my heart in your blog. It is uncanny how we all have the same thoughts, shortcomings, think we arent doing good enough. I think you said it best when you said before long you will give your job over to 3 shifts of nurses. Also a Physical Therapist, speech therapist, nursing aid. housekeepers, cooks, social workers and whoever else they need to keep the nursing homes going. I came to that realization last year when my mom was dying from renal failure. I am an RN, I thought I could surely take care of one little woman as well as my alzheimer spouse. Boy was I wrong. i figured it out pretty quick as much as I loved her I couldn"t do it. The nursing home has that entire staff and 3 shifts. I hope I have the sense to realize that when the time comes for my DH.