I invite you to log onto the home page - www.thealzheimerspouse.com - and read this weekend's blog. I am not feeling humorous or upbeat, only honest. I cannot help how I feel. I am wondering if any of you are feeling the same as what I wrote in the blog. To those of you who manage to handle it all so well and remain upbeat, I would surely like to hear how you do it.
Joan, let me tell you what I am feeling guilty about. I think that I am "making light" way too much of things that DH says and does. Son has told me more than once that I should not "make fun" of him. I don't think that I am doing that and like you have said before, "If I don't laugh I will cry." I feel guilty that I don't include DH in more discussions and decisions. I know that I really can't let him make the decisions but I should let him feel part of the plan. I feel guilty that I have to talk around some issues to keep him calm. I used to be able to talk with him about every little thing and I know that I can't any more. I feel guilty when I make him go to the store and on errands with me. He really doesn't like to leave the house and it is good for his mood when he does. I feel guilty when I find a way to leave the house without him. A trip to the store by myself is so peaceful. I feel guilty when I make him stay up later in the evening, even when he is so tired. Then, on the days I encourage him to go to bed early, I feel guilty for not spending the time with him.
this list goes on and on. All the guilty feelings do for me is give me a headache.
Yeah, the burnout happens. I don't care how much we try to be masters of our own attitudes...this job can drown you, even when you tell yourself it's not as empirically hard as say--ditch digging. The loss of relationship, combined with loss of freedom to access the activities that we take on to keep us sane, is nuts.
In the face of Jeff's step-down in function, the only thing that's giving me a spark of hope (combined with a heaping helping of that good old guilt,) is the thought that--in the foreseeable future--both of us might get more of what we need through placement. Maybe I'm deluding myself, but it's the straw at which I'm grasping.
Joan, first let me say how sorry I am to hear you are so burned out. I remember that feeling well, and it sucks!!
Next I would kindly advise that you not try to compare yourself with others. This is your journey, your emotions, it can not be compared to anyone else’s. None of us have it better or worse, we have our own journey, and our own heartache. I no longer believe that there are minor problems. What is nothing to me, might mean everything to someone else. We just can't judge what will affect another, only what effects us.
Also, you need to try to let go of the guilt. I know from your past blogs that you DO know you have nothing to feel guilty about! We each are doing the very best we can in an impossible situation.
"I feel guilty that I do not consider this job a “privilege” as many of you do."
I think, at least for me, the "privilege" feeling only comes after the years of torture. If one were to look back on the post of those of us who now consider this job an honor, a privilege, one would see while in the midst of the middle stages, most of us were just as burned out and frustrated as you are now!
Late stage brings its own unbearable heartache...... but the caregiving is 'easier' in many ways. Most are like my Lynn, bedbound, unable to feed themselves, or do anything for themselves. You are no longer running yourself ragged trying to keep up with them and all the 'mischief' they can get into. The anger and frustration is replaced with compassion and in truth a bit of pity. I have gone from wife, to caregiver, to ferocious protector.
It's so hard not to feel guilty...for our feelings, wishing it was all over, guilty for I just want to be a wife / me again, not like a mother to a little boy who can't be left alone for a few minutes. I don't think of this job a “privilege” ...it would be a “privilege” to be his wife again, to love and be like old times....and that's not going to happen, can never go back!
oh...how odd, I was just having the biggest guilt and logged on to read this.
For the first time in years..he looked over at me and said, "Do you want to make love?"
I was terrified, no I did not want to. I told him maybe later, and I think , that maybe that should be. I so don't want to, but he is so sweet and after all, my man.
Joan, I am with you all the way. My DH isn't as bad as Sid or many of the spouses here but I am still sick of the care giving role. I definitey do not consider it a privilege and will gladly hand it over to anyone who would like to take it on!
Don't ever feel guilty Joan, don't ever!!!!! I have always thought that exhaustion is our greatest enemy......not Alzheimers because when you have the disease it's a done deal. Exhaustion mental or physcial are for an Alzheimer's spouse ...... the enemy. Know one who does this job should feel guilty about any feeling or emotion they/we have.
I was just telling DD how tired I was. The last few days with the storms didn't help. My legs hurt and I just want to lay down and go to sleep. But I have to work in the morning so I will be lucky to get 6 hours sleep. But I know it could be much worse.
I often feel guilty, I take good care of DH. But I do not spend any real time with him. He can't talk very well and I get mad trying to guess what he is talking about.
I am so tired right now, I don't even know what I am trying to say. Guess it is we all get to tired and we all feel guilt. And I think that just comes with being a caregiver to an Alzheimer spouse.
Terry is right no one should feel guilty about any feeling or emotion they/ we have.
I am so sorry for your burnout. I relate and it is full of so many emotions of guilt, being tired, feeling irritable to name a few. I am grateful for your honesty in your blogs and look forward to them. It is one of the things to let me know what I am going thru is "normal" and not alone. This is one of those times you can lean on us. Hopefully our responses bring a little relief. Try to rest, do only what you have too as the rest can wait. Your quality of life needs to take priority now so you don't get sick. You are doing a great job.
Joan -- I always admire how open and honest you are about the caregiver/spouse experience. Everything you've ever expressed I have certainly felt too. WE are probably all way too hard on ourselves in judging our caregiving abilities. And yet we know we want to do the very best we can for them. Your blogs are so helpful-- you are so brave in admitting how difficult caregiving is. Don't ever stop telling the truth!
Joan- I don't feel privileged either. And I feel guilty sometimes because I don't feel privileged! I feel deprived---of my partner and my dreams. My husband needs help with ADLs and that I can tolerate, but it's the loneliness that is more difficult. I want to say"Hey, did you see that? " or "Do you know what happened today?" But, I am more fortunate than others in that I have my artwork, my dogs, my friends,and generally my sense of humor. I like your honesty and so relate to your feelings.
The loneliness is debilitating. I catch myself many times a day, about to share something with my DH and stop myself. I silently scold myself, “What are you thinking? He will likely not respond and if he does, he will be confused and miss the point. No point in saying a thing.” And even though this happens many times a day, I do not get used to it.
I recently decided that calling this disease “the long goodbye” makes it sound too gentle. It should be called “death by a thousand cuts.”
Hang in there, Joan. And don’t worry about all those chores that are calling. When I had 2 boys under 2 years of age, I would make excuses when people came to the door. “Oh pardon the mess – <insert random excuse here>.” I finally got to the point where I would say, “Pardon the mess - this is apparently the way we live.” Better that you have a few minutes to try and refresh, than that you have a spotless room to collapse in.
Joan, I am going to drag and drop your edition today to my desktop and echo everything you have said. I hate the job of caregiver. I get jealous, emerald green with envy at the lives our kids and friends are enjoying when we can't even drive anywhere now for a fun outing..go to dinner and after two bites he is ready to leave..so I now take the rubber maid divided dishes with us to save on those styrofoam carryouts things... I can come into the house and say I am back and there is no acknowledgement..he just looks at at the tv...or I start to make a remark about something we are watching and I get no response..he is either looking at the tv or is dozing. The daily urging to change those damn clothes before I take the sissors to them, get the shower, etc...and then I always have to say no when he asks if I need help when I am nearly done with whatever chore I am in the midst of doing. Every damn day is the same..just today on my FB one of the kids posted about the great day in Reykjavik with the kids, swimming, dining out etc and a big dance and tomorrow is the battle of the bands, then more swimming and then return home..I just posted " Nice someone is having fun, I am up to my a$$ in taxes and the usual details of every day." I hate it that projects take so long to get done for all the reasons you listed..running them everywhere, picking up meds, going to the bank, and trying to eek out just a little time somewhere for myself.
I have made a little project for myself...I squirrel a little $$ out of my pay, not DHs, and when I feel like it I buy a little something that shines or sparkles....recently I got a purse at the Coach outlet..yeah it is the one from last year...( otherwise too$$$) but is is a shimmery sort of gray..so I can haul the check books and extra keys etc so DH doesn't find them when I am away, and now and then I'll splurge on something bigger like a piece of jewelry, hair cut, color the gray, and even new yard for knitting..I am just learning but love to look at all the yarns out there...some are soooo soft!!!! but also some are so$$!!
I hate that the partnership is really gone. We always divided the chores, bills etc...he took care of the big house hold bills and I took care of the kids and grandkids birthdays and Christmas gifts and things for the pets etc...we shared the tasks. My house too looks like a bomb went off sometimes...I was always a Better Homes and Gardens kind of housekeeper..took pride in my hooch always looking ready for company..hahaha..now there is dust and just as you say, when I am not running for him and even when his pals take him out and wow now I have the time to do this chore or that without interruption..I don't wanna do it..I wanna go shopping window shopping, or out on a photo shoot, anything but that 4 letter wordWORK.
I do think we, non paid fulltime caregivers, need to treat ourselves somehow no matter how tight the bucks are....it doesn't have to be something big and $$$$$$ but we need a reward too even if it is just us acknowledging and giving our tired selves the pat on the back no one else will.
Coco, maybe just a snuggle would do the trick...not quite the same but for years when my DH became unable to do much due to diabetes, at least a snuggle time was nice..now I see the tv ads and these couples walking hand in hand, or just sitting there together or like last Sunday I saw this couple I know slightly, he had his arm around his wife during the sermon..with just a little stroke on her arm now and then....haunting...just lets me know how empty my life is now...
Mimi, what a lovely post , so honest and true. That advice about treating ourselves is so necessary. Tomorrow I go for my bi monthly snazzy short haircut, with tip it comes to $50!! but she is so good and does it right. Dh sits in the car, and I am getting to where I just cannot let that happen anymore.
I did snuggle him earlier, and I am sure he has likely forgotten something that so affected me. It was so out of the blue, this was a part of our lives I really thought was over.
I spent some time extra with him this evening, played some Hawaiian music which makes him happy for awhile. I even did a few hula steps for him which brought out some laughter. It almost seemed like he was doing it to make me happy, and that he could not wait to get back to his bed and his silent movies.
I see people too. In the supermarket for example ; "honey, do you want the vanilla or the cherry ice cream?" "sweetie, do you think the dog would like to try this treat?", "oh, help me choose an avocado..."
And I stand there and hope I am not seething with resentment because I know I will never have this with H. I don't think I am, I hope I can appreciate the happiness of others. I don't have it; it is what it is.
Coco, I hear you. Just this afternoon H brushed past me and put his hands around my waist, just for a minute and I could feel myself going into that yoga position, I can't remember the name right now, but it means total stillness; thinking, I hope he does not want THIS.
Mimi, sheesh, a vaca in Iceland or do they live there?
Joan, I often feel guilty when in the morning I feel myself waking up and have to put an ativan under my tongue so I can get ready to face another day of this.
Aside from my gratitude to you for this forum, I think you are so strong. To piggyback from Nikki- as I understood it- we are all in our own private hell. We are different people with different struggles, but so far, we do get up every day and get done what has to be done as best we can.
Joan I just read your latest blog and could not agree with you more. The final two years of caregiving was the worst. As the decline became more rapid the responsibility became greater. The meaningful conversations and partnership disappeared. We had always shared duties with helping each other out wherever it was needed. As time passed all those things became my task alone and topping it off was the fact that she wanted me by her 24/7 which made those tasks which were necessary almost impossible to do without a confrontation. The stress increased to a point where life became intolerable. Now looking back after months of missing her I realize that those things which took place has made me a much stronger person and able to go forward without her. God does work in mysterious ways and now i see why those things had to happen the way they did. Hang in because the day will come when you too will look back and realize how strong and independent you have become because of your journey. May God bless you with strength,wisdom,and the patience to continue this journey.
I echo Bruce's comments. My AD suffers from PTSD as well as Alzheimer's which means I suffer from the effects of both of them as well. I try to remember God must have trusted me with this task even though I wish I could have enjoyed having an equal spouse. There is a 10 year difference between us and I feel I am missing the best years-kids are out of the house and we should be enjoying the fruits of our labor and each other. My spouse cries everyday, cannot remember much, I do meds, meals, house, bills, driving,etc., no one to do fun things with and it is tiring and not what I dreamed of. I keep remembering biblical stories where God gave tasks to those who felt they couldn't do the job but they ended up doing them. So I guess he has chosen us because he knows and trusts that we can. it doesn't make me less tired or stressed but it does keep me going. I am trying to give myself permission to let go and take care of me. It may be a walk, visit a neighbor, read a book, and occasionally even treat myself to a massage.
Dear Joan---I sincerely hope you get some well-deserved help soon! You have done so much for all of us by having this website, and while I know our comments do not help your physical exhaustion, I hope you know how much you are appreciated! And let me add, I have never in 6+ years considered this journey a "privilege" (although I have been able to find some silver linings), in fact, one reason I never liked the "other" website is the many spouses discussing how this disease had made their marriage stronger than ever, really?????? Some days, I realize that it is only those wedding vows that keep me from walking out the door. Other days may be better, and I may find blessings somehow related to this journey, but the disease itself and the fact my husband is "gone" but his body is hanging on, NOT a blessing. As said above, we are all in our own private hell, but gain from the collective wisdom you have made possible here.
I cannot fathom anyone saying that AD has made their marriage stronger than ever. Perhaps if you vehemently hate your spouse and can get some sick type of revenge by seeing them diminished? Remember, there are a lot of strange people out there!
To address the guilt issue from the other direction: I've haven't felt any during this whole ordeal. I've put my own life on hold for almost 7 years now; why would I feel any guilt? Would I call caregiving a privilege--no way. It's simply what he would do for me if the shoe were on the other foot, I'm sure. Good care is what he deserves, plain and simple. When this is over and I look back on it, I know I'll be satisfied with how I handled it.
Marilyn, I agree 100% with what you said. I have never felt guilt either. I gave up my career, social activities, fun things - everything for 8 years now. He would do the same for me.
Joan, I don't write often, but I read this site everyday. I admire you and all it has taken to keep this site going. You may not realize that you have been the salvation for many of us. I can never thank you enough. You sure as hell are entitled to whine whenever you feel like. Everyone needs to vent. There is no reason to feel guilt either. I have none. All one can do is the best they can, no matter what it is. I know I am doing the best that I can do. I love this man and could not do any less. I consider the care I give, is my current job. Your blog is all of us. Thank you.
Yep, I strongly agree with just about everything already said, Joan. Yet another topic you totally nailed. I think we all have caregiver burnout 100% of the time ... it's just the degree of burnout that varies from week to week, day to day, hour to hour, minute to minute. Doing everything you once shared with a partner, unable to ask your lifelong partner to carry out one simple direction ... so sad. And as I've noted before on other posts, for me the greatest loss by far is the inability to fully share what I am feeling with my wife. The one person in this world that I knew I could share anything with, anytime ... the one person who could help me deal with whatever was bothering me ... the one person who was always 'there for me' no matter what ... is now the one person I cannot share with anymore. Clare may still be 'there' sitting next to me, even holding hands with me. But the person who used to be inside my Clare is not there anymore. And that hurts more than anything.
I had an explicitly feminist marriage. I only agreed to marriage with the commitment that he would do half the household chores, and I kept him to it (though we did avoid tension by having a housecleaning service once we had kids). We merged our salaries in a joint account but other funds such as retirement accounts we handled separately. We both had academic jobs so he did some share of driving the kids around to activities. He did the kids' nighttime routine when they were young and when they got older he cooked dinner most nights.
The life we are leading even with him in a fairly early stage isn't what I signed up for. I'm fed up with the responsibility to cook dinner every night. The last thing he was doing as share of the family work was loading the dishwasher, and I agreed a few weeks ago that I would take it over so he could spend that time on the toilet. Two doctors had recommended bowel training (sitting at the same time two or three times a day) to help bowel incontinence, and after refusing to structure his life that much my husband finally agreed to try it. It does at least seem to be working. But it really bothered me that he felt none of the grief I felt about his no longer doing any share of the household responsibilities.
pamsc--I understand what you're saying, but I doubt that anyone here has the life they signed up for. Even me, knowing Steve's Dad had EOAD, never understood how devastating this illness is.
That is true Marilyn and Pam. I would call my marriage "feminist" as well, but more in the sense of equal respect and a willingess, on both our parts, to fill in the blanks of living based on skills, interests. Not so much in the sense that I can claim to have had a terribly meaningful career...I was more of jill-of-all-trades. However, even those whose marriages hewed to traditional earlier 20 C. gender lines are probably not feeling like they signed up for bearing the full weight of a disabled spouse. Nobody is built for doing this 24/7.
I can relate to most of the comments above, especially from acvann. I'm in Florida now visiting our daughter and her husband. They are buying a condo here, and I don't remember ever seeing her so excited. I think about sharing this with my wife when I get home, then realize that it will mean nothing to her.
Sorry, I do understand that none of us signed up for this. We just each differ in which losses are particularly painful. The loss of sharing chores brings a particularly strong "but we had an agreement it wasn't going to be this way" reaction in me. But I have always done a lot of the more complex financial stuff, so taking that on is easier for me than it is for some.
Yeah, I see what you mean Pam. I guess I went from doing part of all areas to doing all of all areas. I think the aspect that was the most emotionally difficult for me at the time was when the kids were involved in H.S. activities and there were so many very involved dads. There is a bit of a sense of hitting a social barrier when you present just yourself, and yourself alone, as the available resource. I think Marilyn has alluded to this sense that society was built for and supports couplehood more than it does singles.
I have said many times that I never know which blogs will resonate with readers. I am often surprised at the ones that do and the one's that do not. This one certainly seems to be one that hit the nail on the head for so many of you. It is probably hard to believe, but I struggle with the honesty with which I write. It is very difficult to expose my innermost thoughts and feelings to the public, but I do so because I feel that it will help others who are struggling with the same emotions and think they are the only ones who feel the way they do.
This Alzheimer's journey is a nightmare that just keeps getting worse, and from which I cannot awake. I hate it. Oh yeah, I'll emerge stronger and wiser, but I don't care. I could have lived just fine less strong and less wise without having to go through this Hell. And then I think about the Hell our spouses with the disease are going through - they didn't ask for it either, and they certainly don't deserve it.
I sure agree about not needing this extra dose of character building; I thought I was staunch enough before. What I did gain was an absolute conviction that I will not let anyone walk over me, from a tradesmen up to the professionals. (Actually, I've found the tradesmen easier.) Like everyone here, we've had to do such battle for our spouses that we have become formidable. This was brought home to me after having to go to court on Friday. I found it tough, but I think that I made my points successfully and didn't allow anyone or any thing to be fluffed under the carpet - and boy, was that tried! It's not the way I would choose to spend my time, but my satisfaction is that all this b.s. that has been going on for the last many years has been exposed and is now on record, and the indications are that it will be handled by the legal system successfully without any more input from me. But, oh God, would I ever want to go through this again? No! No! No!
Pam, I wish I had done some of the "more complex financial stuff" all along! Although we had a relationship that was more equal than many couples, since Steve was a CPA, that was his domain. I would use the word traumatic to describe my reaction to taking it over. You can hire someone easily to do domestic chores, but it's a much more daunting task to take on learning how to handle financial decisions. Happy to say that I survived it!
Yes, Emily, I do think that in our society, being part of a couple is the norm (if one is below a certain chronological age or has a "younger" outlook). For example, I've had several workmen here who don't know me personally say "tell your husband blah blah blah". Just because I live in an individual home, I suppose, they assume my husband must live there.
I certainly agree that I think my character would be just fine without these past few yrs as the wife of an alzheimer pt. I find my care is much better, much nicer whenever I am able to escape for a few hours for myself. i have hired a respite/housekeeper. Housekeeper for him, so he will allow her in, respite for me, so I can get out. Its worked out better than I ever dreamed. I come home after a few hrs to myself to a clean home!! Also, Im very nice to myself. We go out to eat a lot. I treat myself to shopping when I want. Its not perfect but it helps!
I might go for a year of "character building" but I'm entering year4 and each year is more demanding. I resent seeing couples involved in daily tasks that I took so much for granted....taking a walk with the dogs at night.
This topic really hit a nerve with me. It brought up so many feelings that I didn't know how to start to put them into words. It didn't help any that on almost the same day, our newspaper posted in its words of wisdom section: "It's not the burden, it's the way that you carry it." (Oh, really? Please excuse me while I pound my head against the wall for a minute here.)
For some reason, in bed last night I started thinking about water. Water is so soft that when rain falls from way up in the sky, it doesn't knock you unconscious when it hits you on the head. But that same water, over time, can carve its way through solid rock. Caregiving is sort of like that. Maybe nothing big happens during the day, but at the end of the day, you're still exhausted. And you add day to day, month to month, and year to year, and caregiving does sort of carve its way right through you.
Joan, after almost eight years, you shouldn't feel guilty about a thing! We're all stuck in a situation not of our own making. We've traded being a loving, cared-for spouse for being an exhausted, burned-out caregiver. The grief and stress and sheer amount of work that we do would bring the strongest person to their knees. I think we're all trying to do something that's really not humanly possible, but we're all doing the best we can to pull off a miracle. And no matter how much we do, we think we should do more. No wonder we feel exhausted and guilty.
jank thats a great metaphor about the water and carving thru us. its so true. like a steady drip nothing in itself but over long periods of time such destruction. divvi
Joan thank you again for another excellent blog. I also feel guilt but I know I am doing the best I can. Yesterday after spending the last month dealing with dh's life-threatening turns I finally came home to get our finances in order (before the onslaught of med bills) and I just put my head on the desk and cried. Tax info a month behind when I usu. do it and I only do that because he can no longer do it wah but the thing is I know there are other people who understand and we continue to put the next foot forward so we don't fall.
I don't feel guilty and never have on this journey. I don't feel "privileged" to be a caregiver. I should have taken over finances before I did. And I made excuses when hb didn't attend some school functions of kids long before I knew anything about dementia. Indifference? I have screamed and cried to the trees in the woods around us--no point in doing it to hb who hasn't a clue. Once I did start crying while I was driving (don't remember if anything specific turned on the faucet) and hb said, "That isn't necessary." BUT I did sign on to the marriage commitment and so I continue as caregiver/advocate and visit hb daily at various times in the memory wing of the local care center. I relate to Jan K's water symbolism. I do "Cast MY anxiety on Him because He cares for ME." Zibby's translation 1 Peter 5:7 and plug one foot in front of the other through the mud and mire of dementia.
I feel no guilt regarding DH'scondition, care, nor recent Placement. This job is too big for oneperson. Because of our disablities, we made a team, filling in the areas the other couldn't do. I equate DH's onset of Mental Illness, eventual developmentof VaD,and recent Dx of CHF as"the breaks". Not really different than if he'd beenin a severe car crash with injuries, or develkoped Cancer. You deal. There is no guilt in any of this. I did nothing wrong. I did not fail in seeing that he received and is receiving the care he needs. As to exhaustion----------there is that!! BIG TIME. As caregivers we have to get help in--the earlier the better. And we have to take time for respite. We have to focus on the work only we can do and accept, arrange, have help with the rest. The old cliche--If we don't take care of ourselves, who will there be to take care of our LOs?
This is the very first thread that I read just before joining. It knocked my socks off! The fearless honesty of how you really feel made me feel so good. I hate where this has left me even though I do my caregiving for my husband. But like the rest 110% is all on me and his family doesn't think there is anything wrong with him! He is between 5th and 6th stage and they think his odd behavior is from too many pills. If I hear it's the "drugs" again one more time--I'm gonna die!! I know what he takes or has to take and at least if it were a drug problem, I would put him in detox and start to live again for heaven's sake. And I get most of the blame for this so called drug problem because I let him have them! So it's hard enough not to feel guilty for forgetting or not getting everything done--his family has set themselves up as critics. The physical part of care, I have been able to handle , but his changed personality and mouth are what hurts me so very bad. Today was our 24th anniversary--and he launched into a tirade about how useless I am--on and on. I cried and cried. I have Lupus, Cushings, and Adrenal Insufficiency, just two weeks ago the ambulance had to come and get me due to adrenal insufficiency and I was hospitalized for three days. So I really can't take much more. But his famiily just doesn't think there is anything wrong and if I were to try and put him in a home or get some help, they will fight it tooth and nail. They have already taken control of his finances==as I said weve been married 24 years, I didn't marry for money. All we are talking about is social security, but I pay the entire household expense from my ocial security as the family is "handling" his money. So financially it's also all up to me. The sister who handles hid money loves to buy lottery tickets. Oh Lord, how did I ever get into this mess. yet every day I do get up and I do try my best because I was raised to believe you get married and you take care of your own. I just didn't know that I would feel so abused, Bless you all, I read every single one of these posts, thanks for admitting the no, this is not fun nor is it ok.
Joan...how in the world you handle this blog and be a caregiver for two different people is beyond most of us...and certainly would cause most anyone, even the strongest among us, to go on a major downer. Quilt should ever be apart of your thinking....."easy for me to say..right??"....
One thing I have found helpful in this caregiver mode...is to talk to my dh as if he understands every word I say...when I know he only understands at the most 10% of what I am telling him and that 10% he will forget within 10 mins. But, It makes me feel like he is still a whole person. If he wants to talk about something that makes no sense, questions why I do this or that, wants something explained to him.....I give him the longest answer I can muster up. Often most of it is not true...and I keep asking him while I am telling these major fiblets if he is understanding what I am telling him...and he always answers yes. I can see by the expression on his face that I have totally confused him...It is difficult to explain why I do this...but, it is amazing how it has curtailed many of the ugly talks we use to have and when he would accuse me of who knows what, but it wasn't good and usally wasn't true. This new conversation thing I have started with him seems to keep him from going off the deep end....and helps me to feel like I am treating him like a "real person"...and not a person with Alz.
You may have tried this Joan and others, but if not...try it...it may make your mate feel better and you too.
Cookie - yes on getting an elder attorney. If they have control of his SS then they had to go through the SS and become representative payee - of which they will have to account for every penny of his money. If they did not do this, then you need to inform SS that they illegally are taking his money. His check should be helping to pay the bills, not just yours. If they are so insistent there is nothing wrong and insist on controlling his check then send him to them.
Welcome Cookie! Sorry to hear of your trouble, but am glad you have found your way here. I am not sure why his family ever became in charge of his SS check, but I would try to rectify that situation as soon as possible.
Sometimes you will hear people say things like “Alzheimer’s brings out their “true” personality” or it amplifies already existent bad behaviors. This use to tick me off royally. I then realized they are just ignorant and it isn’t really their fault.
Like you, the most difficult part for me was my husbands Lynn’s personality changes. He was always such a kind, gentle man and watching Alzheimer’s turn him into an aggressive angry stranger was beyond difficult. Joan has a number on threads here about this, she aptly termed this as the “AD Devil” If you do a search you should find some previous threads.
If it brings you any comfort, Lynn was as bad as they come, but that too did pass. He is now once again so kind and loving. It really is just a matter of where the disease is effecting the brain. It makes it easier to accept, but it still hurts deeply when you are living it. Sorry you had such a crappy anniversary, so so sad….. ((hugs))
oH, thank you thank you "this too shall pass Good Good advice. The way they have his money is this: The first of 2011 or therabouts, I went to the pharmacy and found there was not money in our joint checking of 22 years to pay for my meds. You better believe I came home and asked him about it and was met with the blank stare. this continued and in April, I simply got my own account and put my social security check in it. When he found out, he locked me out of the house and had to be removed by the police after a week of raging==He was put inpatient for a week to adjust his meds. During this time(and I suspect sometime before) I found he was going to the bank and taking money to his sister to lock in her safe for safe keeping. This left me with one alternative=to pay the mortgage and all bills or lose everything. So legally no one has accessed h is single account except for him==he just hand carries money to his sister who plays lots of lottery tickets. I feel like the most stupid woman on earth that I could literally have this happen and get so bad and not know it. Much of this started up(I found out later) while I was in the hospital for a week in Dec 2010 I also have several thousand that was gone from my retired ment account--He went for months saying we are so broke. well, yes we were==his sister is doing well. And Nikki, the assumption that the true colors of the personality are coming out is the most hurtful thing I think that has ever been said to me. Thank you for bringing that up. I feel like they are saying, look dummy you married a jerk 20 some years ago and now you are just figuring it out
Welcome cookiemarie to our home away from home -where no one judges you and you are loved for who you are (not what you say because here you can speak your mind and still feel loved) unlike at home where lots of people say they love you only to turn their backs when you need them most.How long have you been dealing with this dreadful disease?It can be h--- no matter how long because I have found one day in the life of AD caregiver can seem like eternity in my life!!!! Good luck with the inlaws!!!!!!!