I invite you to log onto the home page - www.thealzheimerspouse.com - and read my latest blog. Am I the only one who sometimes "falls off the wagon", so to speak, or do others of you make the same mistake I did?
Noooooooooo!(Do you see me shaking my head?) You are not the only one, I do it a lot and what you said at the end about wanting to see any sign of the way your husband use to be(not your exact words but you get the point) is what motivates me to keep trying but everytime I do it I tell myself "never again, I am not going to do it again, he is not there anymore!" I think you are right about the going into the wife mode insead of the caregiver mode. It is next to impossible to seperate the two but that is what we HAVE to do. I am not sure how to do that but I have no choice but to keep trying. All I can say is remember that day and how you felt when you tried to get him to understand and couldn't. I see that drawn curtain all the time and I am getting to know how long I can talk before it happens.
The problem is that we know they cannot reason but it's so hard to accept the fact. My DH gets so upset about the man in the mirror, the people on TV, people who walk down the street, pictures on magazines, and I found out during my 6 days without power, the voices on the radio are in the room with us. Now, that's one long sentence. It is so hard not to try reasoning with him when I am trying to explain things to him. He even thinks some person is sitting on the sofa when it is only pillows. Some nights he doesn't want to go to bed because he needs to stay up to protect me. I know there are meds for that but all we have tried made things much worse. So, I still find myself reasoning. Sorry to say that sometimes I raise my voice and say things that I should not say. I just straighten up my halo and try to do better...
OMG Joan, you must be a fly on the wall in my house & then write your blogs about me & my behavior! Just today when I told my DH to get his sweatshirt off the bed & pointed right at it he looked at the window & said, “Is it there?” Now if I would have been in caregiver mode I would have gone over & picked up the sweatshirt & handed it to him. However I was in “wife in denial” mode so I again pointed at the sweatshirt & said very loudly (sounds better than saying yelled), “No, it’s right there.” He finally saw it & picked it up, but he knew I was upset & he said that he was sorry. Of course that made me feel bad. Even though that little voice in my head tells me it’s not his fault, sometimes I just don’t pay attention.
I worked for attorneys all my working years - some of the very best. I learned early on DO NOT ARGUE. I guess this has carried forward into my life with ALZ. When I realized what it did to DH when I corrected him or asked him to do something and he didn't, I went into my DO NOT ARGUE mode. It has made our lives so much easier. No, I don't have a halo and I get upset sometimes, but I either walk away, change the subject or redirect him. This has been a lifesaver for me. DH has said to me many times, "you make everything so stress-free for me, thank you for that, because some things I just can't help doing or saying".
Well I wonder is there a full moon out??? Seems we are all in this popcorn popper today. DH got up ok but after his morning round of meds and not eating when he should, he started to get calmy feeling and looked pretty much like he didn't feel good...argues with me about everything.. Missed my hike cuz I thought I was going to have to take him to the hospital...didn't in the end.. Later today a cross breeze startled the cat that jumped out and knocked over a glass making a loud noise...then he wants to help but he is more in the way than help...oh there is so much more over this past week..
My hiking pal comes this afternoon to see how he is..by now I am so frustrated I told her I was thinking about going out and playing in the traffic and see what happens. I don't want the responsibility any more, I don't want to do this anymore. I want to resign.
I totally understand where you're coming from b/c I do exactly the same thing. Sometimes I forget he has dementia and think he's doing it just to rattle my cage. It's hard. So many times I wish he was the same person I knew but it's not going to happen. We're just human, we're not saints yet. All we can do is keep trying to do our best. Nobody is perfect. We can only do so much. Don't beat yourself up, we all have done the same thing.
OK Joan-we must all be related-I react the same way to Paul over and over again.I know he can not help what he does but sometimes I just flip out. I get so tired of the slow movements and the following me everywhere I go,even the bathroom.He will sometimes just stand at the bathroom door and wait till I come out,drives me crazy! We do fairly well inside the house but there is so much for me to do outside now and I have to take him out with me,but it isnearly impossible to get anything done and keep an eye on him. I have done one thing that I think is important-I now have an ankle braclet on him and he can be tracked anywhere that he might wander off to even in theses hills and hollows that we live in.
Just the other night I went into meltdown mode when it was time to shower and get ready for bed. By that time I am tired and I want everything to move along quickly. My Dh would not cooperate AT ALL! Wouldn't get undressed so decided he could brush his teeth first. I'd put toothpaste on his brush and he would wash it off and then scrub the sink. More toothpaste - more scrubbing. Tried to "explain" that it is not sanitary to scrub the sink with his toothbrush (for the umpteenth time) and he just got cockey and said he'd do what he wanted which set me off and I stormed out of the bathroom with the toothbrush and it just went downhill from there. What really set me off was that he had a smerk on his face like he knew he was jerking my chain and that just made me madder. Sometime I think it is a control issue where he knows he is out of control so by doing things to make me mad he can manipulate the situation. Lord, give me strength!
Joan, Joan, Joan!!!! You definitely get stuck in this one issue as it keeps coming up and you continue to react in a wY the rational experienced caregiver knows is pointless or worse. I have no halo either as I get stuck in other ways. do we all have an area - I hate to call it a weak spot, maybe an irrational spot - in which we don't seem to progress and keep repeating behavior we know is futile?
you wrote:" kept telling myself that I had to figure out a way to stop letting his unreasonable behavior aggravate me. I know it is not his fault. It is MY fault for responding improperly."
I don't think you have to stop letting his behavior aggravate you although that would be nice. our husbands are in similar stages and mine's behavior aggravates the he'll out of me but I long gave up reasoning with him or eve attempting to even mention most things at all. but I do react sometimes and my way may be less healthy than yours as I tend to retreat into emotional and/or physical exhaustion, sometimes I go numb and feel like I've got PTSD, sometimes I go into my room and cry or silently scream. so many incidents eat away at me but I do not communicate with DH about it and have not for at least 2-3 years. It was horrible when I tried hashing it out with him but now that I no longer do I feel another part of me is dead. am I making sense?
I hope we can hear from others on this topic. I've been battling my depression and I know making some of the same mistakes since I joined this site in 2007. Joan, this is such a repeated issue with you and you often touch upon the loss of the husband-wife relationship. Maybe this is an area you are clinging to and just not ready to let go of yet.
I dunno....what do you thin? I am not going to read this over because I am afraid it might not make sense. had a bad day, but you got me thinking.
My big mistake yesterday was asking if DH had brushed his teeth. One would have thought my plan was to start WW3. It struck him wrong and he went off. Thankfully after his little tirade he went to sleep in his recliner for 3 hours.
Oh, Joan, I do feel your pain. It is so hard doing what we do, all the while witnessing the disappearance of the man we love. I actually kind of envy that you still behave as a wife and not as the clinician/caregiver is trained to do.
I have noticed myself not being sucked into my dh's dramas lately and have been congratulating myself on my wondrous self control. But, today, I realized that I have all this new found self-control because I am shutting down emotionally towards him. I find this a very sad event. I have lots of loyalty towards him and usually lots of empathy, but the love is getting smaller each day - he has become an obligation that I will care for. I have love for him but am no longer in love with him. Very sad, indeed. I feel pretty empty.
You wrote - "Joan, this is such a repeated issue with you and you often touch upon the loss of the husband-wife relationship. Maybe this is an area you are clinging to and just not ready to let go of yet."
YES, you hit the bullseye with that one. In the blog, I wrote - "Because no matter how much I profess to have accepted his deficiencies, there is still a part of me that thinks he is “not that bad.” And at the end, I wrote - "I am losing so much of him, and it seems to be going faster. The more he declines, the lonelier my life becomes. Is it any wonder I sometimes forget my Alzheimer caregiver persona and slip back into my “wife” persona, expecting this husband to behave and respond as locially as the husband I used to have would have done?"
The cold hard fact is that as much of the loss of him that I have accepted, I have not accepted it totally. Mothert said exactly what I feel - " I realized that I have all this new found self-control because I am shutting down emotionally towards him. I find this a very sad event."
Every time I give up and accept a new behavior, it lessens my stress, but I DO shut down more emotionally towards him; more of "US" is lost, and it is beyond painful.
Joan, None of us are perfect and some of us are far from perfect so it is only natural we are going to go into "wife mode" at times. I don't know how many times I have told myself it is the disease and it works FOR A WHILE and then something will snap and I get angry. DH gets angry too but like everything else he forgets it after a while, which probably is a blessing, but I can't forget so I don't feel like being all loving and caring when he is ready to be "normal". As is often said we do the best we can and it has to be enough. Take care and have a better day today.
is it not the belief that we become 'one' when we married and took our vows? two persons coming together as one? maybe this is the reasoning behind the emotional difficulty in accepting the obvious horrific losses we see in our spouses. no less could we accept it happening to ourselves -and it is -since the 'one' is now affected emotionally physically and financially just as the other ill spouse. in a sense what happens to the ill spouse happens to the caregiver in a mental symbiosis and the separation is hard to differeniate - accepting devastation without a fight is not in our genetic makeup. and worse when they are no longer our partner in love and life, but now a dependent--- and a living infantile individual who will become dependent on their every need before they succumb in the end. after we lose the wife=husband connection and i do believe once that enormous loss is obvious- another side of a maternal/paternal instincts kick in to protect us from that other very significant loss and sadness. its a different type of affection but important and in the end we will now suffer double losses, the one of our spouse and the one of a maternal sorts. no wonder the losses are so overwhelming, its like losing 3 parts, part of ourselves, the spouse and the child. its comparable to no other disease. divvi
divvi-well said. The only controllable aspect is not losing ourselves. If we still have kids or other family we owe it to them to carry on. My girls mention often how proud of me they are. Bill did everything for me and I loved it that way. Now I stand alone and am surprised I am also proud of my independence. My birthday is July 4th!
I understand completely and this is why I wrote in a posting a few weeks ago that although I SHOULD know better and although I DO know better ... I still do the same thing as Joan did sometimes. It's awfully hard to look at my wife and not see my wife ... to look at my wife and always fully accept that whereas she may LOOK like my wife has always looked, she no longer acts/reacts like my wife used to do. And ... no matter how much more I'll still learn about AD ... or how many more support group meetings I'll still attend ... or how many more discussion threads like this I'll still read ... I'd be willing to be that I will STILL have those moments where I expect Clare to be Clare. Logical? No. But it is what it is and I think that although we ALL get a whole lot better at learning how to deal with our spouses as this horrible disease takes its course, I think that many if not most of us will still occasionally slip up and react as if our spouses are 'still there inside even when we KNOW they are not ... and cannot ... be there as they once were. Maybe those reactions stem from a suppressed hope that, just on this one occasion, we can talk with our spouses as we used to do. All I do know is that I plead guilty to foolishly having this expectation without even realizing it every now and then. And even if my actions exacerbate the situation, and I know it's my fault, I feel absolutely no need to apologize for being human!
You have all summed up our feelings so well...out of necessity for our own self-preservation, we "shut down emotionally" and that does give us more self-control....how else would we cope with this horrific disease? Yes our losses are great...and we lose so much as the caregiving years go by. I am having such a hard time accepting these losses, and this particular blog, Joan, and all others' comments have helped me put it in perspective...so now I understand why I feel so overwhelmed with the losses....I am trying so hard to hold on to being a wife...I really don't want to be a parent to my DH...I hate this part of the disease that is forcing me to be that. I want to stay in "wife mode"! I know, I know, that is not possible, and I try to accept it graciously; but it is not the way our marriage was supposed to be. And I guess the anger I feel many times comes out when I become impatient with my DH and seem to expect him to be able to do something that he used to be able to.
Divvi, you are a gem among gems. You put into words how I feel. Thank you.
Bluedaze, it has been a year now...my thoughts are with you...
I guess I am from a different bolt of cloth than many. And I do understand how you all feel. When I was suspecting that my husband had AD, I read everything I could get my hands on, and knew of the changes to expect, and what the final outcome would be. I have done a lot of praying along the way - still do - and I have accepted the changes as they occurred, and tried to take over those things he had been doing while allowing him his dignity. I did get angry at the disease - still am - but because I knew he couldn't help it, and knowing him, he was trying as hard as he could to stay normal - I accepted that I had to take on that as well. I also would get frustrated at the losses as they occurred. I can't change the course of this horrendous disease, but I have been determined to make these last years as pleasant as I can for him...I have years to go. He doesn't.
Yes, we have been as one for almost 50 years...and yet I have accepted that I have lost him, even though he is in that hospital bed close by....and each day I feed him, change him, and tell him I love him. He has no idea who I am. He hasn't been able to talk in over a year. But he is mine.
O Joan, I do this too and am not proud of it. It seems seasonal almost because right now it is the riding lawnmower. Have spent two fruitless days working on it to get it going and hb says did you do this or that which is helpful. (Sometimes he pulls very useful things out of his .......) But then he will say well just get it started and I will do the mowing. He hasn't done the mowing for at least 10 years. My youngest son did it till he went to college and for the last four years I have done it. When my son left I had to call him to get directions on how to start the dang thing because hb could not remember. Anyways I looked at him and told him the above and he just looked sheepish and said I'm sorry you can't get it started. Teeth gritting. Before that it was the snowblower etc. Once I calm down about one thing and remember not to pursue it I move on to a new season and forget again.
I can’t imagine that there is anything else that I can to this discussion. You all have said it ALL! As I kept reading my head kept bobbing up & down (like a bobble-head!). As far as getting things done: I have decided that I will do the most important things first (paying bills, making meals, things like that) but if I don’t get the floor swept or mopped or any of the housework done it’s not going to be important to me. Like I said, I’ll get the necessary things done, but I’m going to do the things I want. People just don’t understand that we have to do pretty much EVERYTHING & that usually doesn’t leave any time for ANYTHING that we enjoy, so from now on I will do things for ME!
When my now senior citizen son was little, 50 yrs ago, he did not read. He was smart, happy, clever--all good stuff--but couldn't, or wouldn't read. I'd yell at him, show him the words in the book: "why are you being so stubborn?' 'what's the matter with you?' 'you're smart,' and he just looked at me with a blank expression. He didn't know why, neither did I nor his teachers. We'd have all been stunned if he'd known the answer and said, "I'm sorry, Mom, but you know I'm dyslexic.' Thank God we stumbled onto the answer in time and he reads well. People know about it now, few knew then.
Years later I'd yell at my DH. The frustration, the profound loss was all counter-intuitive. How can this brilliant, loving, caring man be this way? Eventually I'd learn the answers--but not from him, not from my yelling and asking 'why?' I know 'why?' and he doesn't and even if he has some glimmer of understanding, he's not going to change--except to get worse. We all have our personal rules for living: perfectionist, teacher, attentive, indifferent, always disciplined, lazy, having to have the last word, never being wrong, never late never on time, having to know everything, cross every 't' dot every 'i', etc, but NONE of them work in dealing w/AD - NONE. It can be easier if you adapt the Valley Girl life style--easier--not always--but easier. Their answer is 'whatever...' Whatever gets you through it, whatever gets you through the day, through the hour, the minute. Why ask a coherent question when you know you won't get a coherent answer? Wouldn't you be astonished if an AD person gave you the real answer? With AD the answer will always be 'whatever...'
And we do feel bad, embarrassed, ashamed, whatever when we lose it. But we're human, be grateful that you're normal.
Great anaology. The educator in me should know better than to expect a coherent answer. When Sid gets to the point that he doesn't know where he is or who anyone else is, I would never expect him to answer a "why" question like the one I asked. But while he still appears normal, I do fall into the trap of thinking he can answer my questions.
This happened to me the other day. He asked me to buy a replacement for a broken underground sprinkler. He told me that there was one in the basement drawer. I went to the drawer and there was only one broken sprinkler. I showed it to him and asked if that was the one he wanted. I thought that he had looked at it and he probably did, but he didn't think about it. How was I to know that it was a broken sprinkler from a job that he had done last year, and why was it in our sprinkler drawer. So I bought one after work and brought it home. He looked at it and ranted for almost an hour about how it was the wrong one. He tried to dig up one and have me go get the right one with only 15 minutes until the store closed. He finally calmed down and acted so sorry for the outburst. The next day, when I got home from work at lunch, he had the right one dug up and on the counter waiting for me. I drove to the sprinkler store and exchanged for the right one. He replaced it during the afternoon.
I want to add that DH does not go to stores any more, with or without me. May be once in a blue moon he will go but I have to do all of the store errands. I hate it because I never know if I am getting the right thing. Last summer, I did learn how to replace the sprinkler heads, so I can do it if I need to myself. The day will come for this experience.
Joan, that is exactly right, he acts so "normal" sometimes that I forget the he is probably not processing things correctly.
Well, friends, it may come to this: I went to visit L. In the nursing home where he has been for one week. I came in as Days of Our Lives was starting. After a few minutes I realized it was more important to him right now than seeing me was, so I kissed him and left. Rather than worry that he is not his old self, I'm glad to see him calm and happy.
Coming from someone who has been there, for me at least, I believe we are talking about two different things here. Acceptance of the disease, what it will do to our spouse, the personality changes, the rages, the losses of abilities etc etc... And then there is the complete acceptance of the loss of our spouse. They kind of intermingle, as I was struggling to cope with the changes in Lynn, I was also struggling with the losses of "Us".
The acceptance of the course of the disease was hard, but I did eventually come to fully accept it. The loss of "Us", who we were, what made us a "We".. that was much more difficult!!! I fought it tooth and nail! I believe it is the not wanting to let go of the love we knew, that made me continue to battle a war I knew I just couldn't win. I "knew" it! yet I could NOT accept it. I fought for all I was worth.
For me, I did not achieve complete acceptance until it was crystal clear that most of "My Lynn" ... was gone. …It was heartbreaking torture. It was almost my undoing. Through the pain, I was able to finally concede. I had fought my level best, there was simply nothing else I could do. NOTHING! Then and only then. did I have true acceptance.
But, I will say, with the pain, also comes a sort of peace. Because for me it meant it was time to lay down my weapons, and open my heart again. I was able to look at Lynn with more loving, compassionate eyes.
If it is any consolation to those of you going through this now.... the love does come back. At least for me it has. Oh, it is not the grand love we once shared. It will never again be the love that makes your heart skip a beat....But it is a tender love, and in many ways, much deeper. Today, a smile from Lynn can light my whole world. It is still, so very difficult........ but I do have the peace of complete acceptance.
My advice to you, cut yourselves some serious slack! We are all fighting a losing battle. We are forced into an impossible situation. We are helpless to stop this disease from taking the love of our lives from us. Day after day, year after torturous year we lose our spouse inch by unbearable inch. Damn it, we have every right to be angry! It is natural to fight! We are each doing the very best we can. We will slip, we will have bad days, it is all par for the course. Learn to be kind to you!! ... don’t work so hard at trying to be the perfect caregiver, that too is impossible. Instead work on saving enough of YOU so you can find yourself again "after" ((hugs))
Good for you Nikki, I can relate. My love for Siem has come back -- now that he is no longer angry, restless and irritated but calm and gentle -- nothing like the old Siem, hardly there at all. Now I hug him all the time, and he has even started to hug me back, which was quite startling at first, after so long. Briegull, good for you too. You are wise. Have you seen "Away from her"? I saw it in the cinema when it came out and watched it again on TV last week: breathlessly although I remembered every scene perfectly. Rare for me, because I tend to forget movies. Siem had an attachment to one of the attendants at day care and followed her around and although this rubbed at times, on the whole I was very thankful that he liked someone there. She is sorry to see him leave for the nursing home (Yesterday was his last day and he is going to the nursing home monday morning). I hope he finds someone there that he likes as much.
Nikki, my experience has been similar with love coming back. When he was first dx We had a short period of deep in-love love again which I realize was because I wasn't angry any longer at the way he had been treating our marriage and I could let go of that hurt and expectations. After awhile of the trials and tribulations of figuring out the mess of our finances, getting our house ready to sell and move across the country, helping him through early retirement, spending every night until wee hours researching dementia, and starting to see people drift away, and dealing with his violent rages due to frustration and his unwillingness or inability to help me....well that love started to die.
After a couple years like you I don't see my husband anymore but I do love him deeply and am deeply attached to him but I don't think of him as my husband. I'm not afraid of losing him yet as he is in good health and I would be surprised if I survive him.
Jeannette, my DH had has had a crush on what goes for his daycare here in this little resort town, the bartender at his fav local bar. The fact that she is half his age and a lesbian doesn't seem to bother him. During our first year here he wrote her a poem. I used to book his caregivers hours to cover the time DH insisted ongoing there as it was her night(s) tending bar. Thankfully it was happy hour so they weren't out too late. Interesting caregiver Description this would make. And also, must like driving an hour to and from minor leaguebaseballl games during season. This town is often referred to as "the place misfits go to fit" or AD heaven.
Nikki, I also thank you for you post. It helped me tonight also. I have been feeling like the worse person in the world because I don't always love my dh. He can communicate with words very little, but his actions and facial expressions really burn me up. I have been very verbally mean a lot lately. I do know I am in a chonic depressed mood. I am going to mental health Tues to see if they will help me. I thank the loving caring people here and my faith for helping me to make it this far. Now I will also rely on a stronger chill pill than I had and some serious conseling to get me to the point that I can be the person I know I really am. Even tho I pray for the day my dh can't do anything and I know this sounds mean, it will also be the day I can really see my dh as the sick person he is and quit expecting more of him than he can deliver. I know I will also truly be able to love him again. Once I get used to the things he is loosing I do get nicer to him. It is the shock of him loosing more and more that is hard for me. After I adjust to the new loss, I do seem to handle things better. Thanks for letting me speak, good night to all of you and may God bless you each with a beautiful day ......
I am glad I was able to help in some small way. It is a tough battle we are fighting, we need as many comrades in arms as we can find!
I love Lynn with all my heart. But the fact is, there were times when I was not too proud of the way I reacted to him, or handled a situation in our past. That does not change how very much I love Lynn. It does not mean I didn't do my level best in that moment. What it means is, I was over stressed and left standing alone trying to fight an unbeatable monster....and I was simply overwhelmed!
I dare say we will ALL have moments like that. I use to beat myself up, and I spent a good deal of time thinking about what I would have done differently. But there is the key right there, I didn't have time to think! I was taxed to the max and sometimes I reacted to it. In the grand scheme of things, does it matter? Not a damn bit. Lynn certainly doesn’t remember, so I stopped beating myself up. I know I did the best I could in that moment, and that is all any of us can do!
Mammie, though I always did feel love for Lynn, there were many occasions I didn't like him one bit! There is an old saying I like, "It is hard to kiss the mouth, that chewed your ass all day" When Lynn was in his rage stages, it was very hard to feel love towards him at all. I certainly wasn't "in" love with him, how could I be? I was able to separate "my Lynn" from "Alzheimer’s Lynn" And I think that was my saving grace.
I think while there is any sign of who our loved ones were, we tend to have that "fight" instinct. I know I did!! Lynn is now in late stage. The battles are now behind us. There is no more confrontation. There is no more denial. There is no more glimpses of who Lynn use to be, so I no longer try to hold onto who he was, who we were.
Unlike many others, I am blessed that I do still love Lynn as my husband. Of course we do not have a spouse relationship, but I do have my memories. I am now able to recall our past, it comes in peaceful waves to my wounded soul. Whereas before it was torture to know all we were losing... now that we are at the end of the journey, these memories are bringing me great comfort and peace.