hulamama posted on another thread but decided to answer here instead of getting off topic on it.
Hulamama51 said on a different thread: "Curious to see how many people will admit that they wish sometimes that their loved one would just pass away before things get really bad."
I do.
Every time someones spouse dies I wish it were mine instead, especially for those who had a great marriage. I am tired of this. It has only been almost 6 years but I am really tired of it. For hb I hate seeing him just sitting around, not even doing word search like he used to, not watching tv really - unless it is sports or game shows. It is hard knowing I have to do things he use to do but can't but wants to. It bothers him he can't help so I let him knowing I will have to tell him every step to do, get frustrated when he can't figure it out, and possibly do it over when he is out of sight. It is like a child. When my kids were growing up I was one that found it easier to do it myself than put up with their messes. (thankfully I have mellowed for my grandkids).
Yes, I will be honest - I keep hoping I will wake up one morning and find him not breathing - that we both have been freed. Will I cry, miss him, etc. despite not having the best of marriages? Yes I will - after 42+ years together there are those positive emotions. But, if I am going to have a future as a single person, I want it to start sooner, not later.
After my friend died the 14th I was really down. But after Christmas I decided I need to start taking some positive steps if I am to have a future - otherwise I will be like his mom and die long before he does. One is my medicaid starts the 1st, so I can hopefully get my thyroid back up. The PA I went to in Nevada lowered the dosage and since then I have felt like crap. I also started back to taking my supplements which I quit taking almost a year ago. I am also going to try to start walking - if this inversion ever clears up. The surface air is cold and bad to breathe.
I thank you for your honesty. It is what this website is all about. I am one, as you know, who had one of the best marriages, but all I see ahead for the love of my life is more decline and less quality of life. It makes one contemplate whether a quick heart attack would be better than a long, slow, deep descent into Alzheimer Hell.
Charlotte, Yes, I often wish I would wake up some morning and find he had passed in his sleep. He has absolutely no quality of life. He is stuck in the hospital bed and can do nothing. I play CD's part of the day but I can't sit in there all day. He gets upset when we have to change his diapers and sometimes lashes out. DD got socked in the nose a week ago.
On Christmas day I lost it. It should have been a nice day with both daughters and our handicapped son here. But I was in tears half of the day. I resented eating Christmas dinner off a tray with DH in the bedroom while the others ate in the dining room. I need to get more exercise, I got to Curves 3 times in December, though I will go tomorrow. I just don't feel like doing anything. I sit on my A** when Im not doing 4 loads of wash or cooking meals.
Charlotte, I wrote what I thought and clicked the wrong line so it disappeared. I too feel much like you do but maybe better my other comments were deleted. You are a strong person, I have seen that in some of your comments, our journey in hell will end and we will make it. HUGS.
Yes, this topic has been discussed many times here over the years. As it always does it makes me sad for those of you who do not have a strong history of love to see you through these difficult times. And if I am honest, it makes me sadder still for those of us who did have beautiful relationships with our spouses. With such great love there is also great loss. Sad any way you cut it.....
Charlotte, As I watch the slow deterioration of my DH from this horrible disease, I have to agree that sometimes I do wish that he would pass before things get to difficult, for either of us. Our marriage has definitely traveled some troubled seas, with very little smooth sailing in between. Do I care about him, will I cry? Yes, and yes, but like you, I would rather start my single life sooner, rather than later. I believe that you and I are about the same age. I am tired. Tired of doing every thing, tired of having to keep my mouth shut, tired of endless stupid tv programs, tired of not being able to go anywhere. And for the moment, because of the Christmas/New Years "holiday" season, I can get no respite. And its too cold for me to get outside and burn off any of my frustrations. Yes, Nikki, it is sad any way you cut it.
Charlotte I completely understand your feelings. My DH's life consists of constant walking and eating (now mostly being fed). A blank stare and no signs of communicating. During NH visits I try reading, looking at pictures, music and everything I can think off. The only response is me asking myself why am I trying to communicate with this stranger who has been non verbal for 3 years.I just leave the NH sad and frustrated every time I visit. The man I married 48 years ago was a kind and loving husband and father. That man died in 2008 and now the stranger masquerading as him walks the halls of the NH.
Charlotte, thank you for your honesty! I love my husband, we haven't had a perfect marriage but this month will be 43 yrs. and yes, I pray that he nor I will have to go thru the last stage. I've seen all I want, I hate what it is doing to him. I hate what it's doing to me. I shudder at the thought of him unable to talk or walk, eat or be unable to recognize me. My prayer each nite is that he will be taken. If The Lord sees fit to leave him here I will do my best to take care of him or see that omeone will if I can't manage. Yes, I'd like for it to be sooner rather than later.
As Nikki wrote, it's sad any way you cut it. Clare and I were lucky enough to have had a fairy tale marriage that is now in its 47th year. Clare has now been dealing with AD for 8 years (5 years since diagnosis, but there were clear signs of AD 8 years ago) and I had to place her in an assisted living facility 4 months ago. Watching her continue to decline is SO sad. Clare has also been dealing with major heart issues for 20 years. I often hope her heart condition takes her peacefully ... well before her AD decline becomes just too unbearable to watch. She is only 67 ... but it is just so sad to see this once vibrant and highly intelligent woman behaving more and more like a pre-school child each day. She is unable to even have a conversation with me anymore. And yet I know these are still the 'good times' in a sense because I know that things are still going to get so much worse. So, yes ... I've had those thoughts about Clare having a fatal heart attack so we both don't have to endure those final stages of Alzheimer's. So very painful.
Charlotte, thank you so much for putting words to what I have thought about so often. I was always afraid to express these thoughts even to my family but I too hope the Good Lord takes him sooner rather than later. I placed him in August and for the most part he has adjusted. I feel sad that he cannot join in many of the activities as they are too much for him. He cannot read anymore so I read to him when I visit. He still knows me and wants me there all the time. I just say I am doing the best I can. It is funny because he has talked about death more and more. He tells me he thinks he has a year and a half. I tell him no one knows. I try to take him out as often as I can because I know the time will come when I can no longer do that. My friends mother had the disease and she was there for 3 years and actually did better than my husband. She woke up one morning and fell over dead with a stroke. All I could think of was what a blessing.
I think you have expressed the prayers of just about every dementia caregiver. I don't want my DH to end up like so many I see when I visit him at the LTC. Right now he is doing well but I dread the place he will eventually end up in. Moving to LTC was the best thing for him. I have found it hard to let him go there and live alone but I will be alright. I know full well what our future holds but there is nothing that I can do to bring him back to who he was before this disease took him away. He has VD and often I pray that it will be fast and with no suffering, but that is not my decision, so I wait and do what I can to keep him in a good place. That is all any of us can do. So this site gives us a place to express what is difficult to talk to family and friends about. Thanks Joan
I to wished my DH would go long before he did. For his sake as well as mine. After all I truly feel he is in a better place. I would feel bad about feeling like that. But we are only human, and for us to think like that is not unusual I'm sure. After all we are at this job, 24/7 for years. I keep telling anyone who will listen, this is not a job for the faint of heart. It is grueling, gut wrenching, and exhausting and this is on a good day.
I really don't wish hb dead but for his sake this horror can be over only when he dies. He has very few somewhat lucid moments, mostly in a frenzy when he is awake and in a very deep sleep when sleeping. Gets very agitated at times and seems worse when needs to have bowel movement, I am sure they have messes as I was there a couple of days ago when I could smell it in the hallway, they were preparing to clean him up. I left for half hour or so and when I went back he was in hallway in wheelchair trying to go somewhere. He didn't know who I was and was just frantic trying to get somewhere but didn't know where. Screams and hollers my name or just hello. They seem to take it all in stride as they have many patients like him or worse. Luckily they like him. He is in a room at the end of a long hallway so I have to walk by all those rooms before his. Medicare has cut him off for no progress in condition so am working with a lawyer to qualify for medicaid, no way can we pay over $7000+ a month. Just almost more than I can cope with, still have to run our business and year end is always busy for bookkeeping. We have a farm. Sorry, this is a vent. Hoping everyone here has a better year ahead.
Charlotte I have to say I had a hard time getting to the end of your post due to the fact my eyes welled up with tears. Even though Paul and I are at the beginning of our journey I have already started to have similar feelings. We have known for at least two years he has had a problem. Diagnosis Dec 12. I have already cancelled going to my younger sister's wedding in the UK in Jan. The anxiety of leaving him is too much to bear. He can't cook any more. Is still quite iindependent but asked me the other day how to switch off the porch light. It is hard seeing people get excited about the New Year. What is there to look forward to? My heart goes out to you . if there is something I have learnt these past few weeks it is to live for the moment. If you would like to chat sometime I am on Facebook. Hugs to all who are dealing with this horrible disease.
I dare to say even those of us who profess a loving marriage and relationship, sometimes think it would be a blessing that our loved ones pass in the night and release us and them from this horrid disease. its always good to hear that true feelings can still be expressed even if unconventional to the rest of the world. they have no idea what we deal with and how long it lasts. divvi
divvi - I think you are one of those whose husband has lingered on the longest. I dread the thought of that long. As many know my FIL went on for almost 25 years and I dread the thought this could go that long.
julie55 - I need your FB name to contact you. My email address is in my profile.
I am a critical care nurse. Most of my patients were "total care" due to the severity of their illnesses/injuries. I honestly feel that I can deal with the total care of him as most of the timeiI just consider him as I would one of my patients. Do I want him to die quickly from a heart attack or stroke? You bet I do. It is so hard to see him being robbed little by little each and every day. He is very aware and it is agonizing for him and heartbreaking for me to witness this.
((divvi)) I know of all the people here, you are one of the few who truly understand me. ((hugs))
I truthfully say that as long as Lynn isn't suffering, I would wish he could live forever. Pure and simple, he is the love of my life, my purpose and my reason. He did not cause this to happen. He too is an innocent victim, even more so than I.
Never once have I wished he would die so my plight could end. That is not to say that I don't understand the thought process for those who spouses are suffering. But that just isn't the case with Lynn. His torment was during the mid stages when he knew what was happening to him. Now he is blissfully unaware and is peaceful, happy and content. His little world is a happy one. As long as that is the case, yeah... I want to hold onto him and treasure the time we have left.
Nikki, when Lloyd got so much worse, I used to pray for his plight to end. Like you, I would have stayed home and taken care of him forever. That last winter really seemed to take a toll on him and he just didn't last.
I have thought about this thread alot, this subject.
When Dado was at home and I was so over the top tired and stressed, I had thoughts of it ending, for him , and me. Now, not so much. Of course, though I have devoted my whole life to be with him for what he has left, it is not near as hard as when he was home. So now...oh, when he whimpers and cries, I can hardly stand it, but I know, he is not ready. So neither am I. Sometimes when he snaps out of it for a moment, his eyes just shine like mirrors, and he is so beautiful.
But it is sooooo different not having to do all the work. My hope is that he will stabilize and hold on for some more years, but that is unlikely as I see changes every week. I have had to put the thought of him passing, on the shelf for now.
Impossible to say this to anyone else but those who walk in these same shoes... I often imagine how it would be if he just passed in his sleep. The irony is that at 66, he is in perfect physical health other than AD. He is in better health than me.
I need to say that his fits of rage and/ anger have led me to these thoughts. At first dx, I assumed I would always keep him home and when necessary have care in the house. Tonight, he had an irrational ( of course) fit of anger directed at my son who is visiting for the holiday. It scared me. I must say FEAR may be my line in the sand.
So, tonight I do fantasize about this nightmare ending peacefully. There is no reason for guilt. We all must know that.
What I have always prayed for is a "soft landing" for my Herbie. Both of his parents died of strokes at about his age. His mother definitely had AD and I do think his father did, too, although he was never diagnosed. This journey is long, thankless and heart breaking. We watch the loves of our lives slowly deteriorate into somebody that we don't recognize. We change into people we don't recognize. I do believe that all of this has a purpose. I have always believed that my husband's disease is all about me and how the Lord wants to mold me into the person He wants me to be and my husband is the chosen vehicle with whom the Lord is teaching me. I have learned a lot about serving, selflessness, giving and giving more, I can now fix almost anything (and I was a princess :)), I have learned about furnaces, heat plumps, roofs, decks, and the list goes on. Stuff I never ever had a care about and never ever thought I'd need to. I have always known that I was a "survivor" and this disease has certainly proven it.
I find that the love I used to have for my dh has changed as I now have taken on the "mama" role. I'm no longer passionate about him, but I am passionate about his care. Early last year I was faced with making a decision about giving him lifesaving care. I hated being in put in that position, but as Nikki said, we are the ones to make those decisions for our lo. I chose to do what was necessary to prevent him from succombing to renal failure. I didn't think it was his time and it wasn't. I know that I will be faced with this decision again and I don't think I'll be ready for it, but make it I will.
I, too, get weary of all that is expected of me and this long, long, unpleasant journey. Many times I long to be free. But just as quickly I realize how lonely I will be without him. There is no good answer to what we all are experiencing - PTL we have each other and this forum.
mothert those are beautiful words, and being passionate about their care, yes that is it all the way. I also have said to myself, and others, that Dado has taught me what life really means, and that I am the clay being molded to become a better person. I just hope, we can survive it, and to continue to hope for the reasons for it all being revealed to us.
T, I too was moved by your words. Such a wise and tender soul you are ((hugs))
I keep thinking about our Julia, about how much she loves her beloved Reno, how he lost his smile and how she knew it was time to let him go...
I think the closer you get to the end of the road, the more you wish for and treasure their smiles, the tighter you hold onto them... the more it becomes about them and their happiness, instead of ours. Or perhaps that is just how it is for me?
You folks may think that no one notices what you do, but you are wrong. Even though it may be secretly, people around you admire what you do and your devotion. You are beacons of light for people who want to know the true meaning of love and devotion. Your friends, your children, and your grandchildren learn from you. Besides loving Lloyd madly, wildly, passionately - this is what I got out of this - trying to show my grandkids the way. Mothert, many are the days I am grateful to God that I married Lloyd for love, not the sex. When he died, we hadn't done the "deed" for about 3 years and there was never anyone to take his place. (That's just how I roll.) First husband was for lust and that marriage circled the drain for 19 years until it, thankfully, went down. Lloyd was for love and he and the marriage were amazing. Last time will be for money (hahaha) so there may not be another.
I think we were very lucky my dh did not have to suffer too long. The last year of his life was awful but he still knew me part of the time. He was violent part of the time but I'm sure I would be to if I didnt know anyone and didnt understand they were trying to help me and not hurt me. He had a brain bleed at the end and only lived a few days where he was completely bed ridden. I know we were blessed. We watched his father suffer for about 10 years in a nh not knowing anything and needing cared for in every way. But just because he is gone doesnt mean you can get on with your life. The after isnt great either.I'm not glad he is gone just that he isnt suffering. I cant imagine living like they have to. This is happening to all of us for a reason we just dont see it. And yes Charlotte, during the journey I wished it would just end.
I've always said that I would never marry again. But, as I have mellowed and learned through this journey, I'm not so sure. I do know that I would not want this caregiver role again. I have a lovely lady friend who fell in love again at 75 after being widowed for 10 years - she is just like any young woman madly in love. I have another friend who's husband of 40 years passed about 3 years ago and she remarried 1 year ago. I was surprised. But, she was so lonely and then was a giggly in love woman again. Too much. I figure if it can happen to them, who knows what God has in mind for the next season of my life? I think I'll just wait and see and be open to His direction. In the meantime, I'll take good care of the man in my life right now. I think he'll keep me pretty busy for quite some time to come.
Linda Mc, You are right, people do notice what we do. A few days after DH passed. My older DD came to me and told me what her DH had said. This is my new son in law of two years. He said I not only took care of DH. But that I stopped my life to do it. I was giving 110% to his care. I was taken aback. But I guess that is what we do. Without even realizing it.
My problem through this was trying my best to give both DH and younger DD 110%. Our youngest is going to be 18 in March. And I feel like I have missed out on so much with her. But I would not change anything that I did. I did the best I could with what was in front of me.
My husband is getting to the stage where these issues are becoming realer. He has a form of Parkinsonism called Multiple System Atrophy, so his physical issues are worse than his cognitive ones. He has been approved for hospice funded palliative care, which was a shock to me--I didn't think we were close to that point yet. He can still walk with a walker and carry on a conversation on a good day. I'm negotiating with the agency, as I think he should still have physical therapy both to keep some function as long as possible and to prevent pain from tight muscles (Medicare will pay for physical therapy if provided by the same agency, but this agency doesn't normally provide it).
I've asked on some disease-specific forums about making the argument for physical therapy, and several people who have responded have said they were uncomfortable with palliative care or hospice because they didn't try to prevent the person from dying of something else first (the example used was giving antibiotics to treat pneumonia). My husband has in the past said very strongly that he didn't want to live past the point of not being able to make decisions for himself, but now that his quality of life is slipping badly his first reaction was that he was not ready for a DNR. I think with more discussion he will be, as he has no heart disease, but we probably aren't ready yet to not treat an infection (hospice actually does treat those in many cases, and he could always go off hospice if he wanted treatment).
What I am trying to say is that it is really hard when the decision to let them die of something else first is even potentially in our hands. He wants to die of something else first, but not while he still has any quality of life. He is right that he has some quality of life, but perhaps not for much longer because he is losing his voice and he will lose a lot when he can no longer communicate easily with his friends. You don't get to pick the perfect moment to die of something else first.
I worked in a LTC facility in the Alzheimer ward. DH volunteered with Alz. patients. We both know what this disease looks like at the end. He has said many times that he wants to die as early as possible to be spared the ending and I agree with him. I just pray I will have the strength to honour his wishes should the time come.
And I confess that there are often times I wish it were now even thought DH is still fairly highly functioning. I am just so tired of doing this. If I have to answer the same question: "what day is it?" again, I think I will scream. And I know it is only going to get worse as time goes on.
The laugh is that while I sometimes wish he were dead and that this was over with, I know that when he dies I will be devastated and lost. Sometimes I think I am losing my mind too.
Charlotte, I have often wished my DH could quietly slip away. He had symptoms of cognitive decline when we met 12 years ago, but I had no idea until later. Nor did he. I was also ill when he and I met and he was my caretaker (well, he made sure I was fed and dishes were cleaned) for a couple of years Then he got sick in early 2006 and things went south pretty quickly. He's only now 50 and I'm 51.
We had little time really to get to know each other before he went down. So, I've never really known the "good" side. And he's never known me not sick. So, we don't have the years of a wonderful relationship to bolster us. Unfortunately, his pre-dementia/dementia/Lyme disease has turned him into someone who hurls verbal abuse & anger at me. He's also been physical. I have to do all paperwork and oversee almost everything. We couldn't afford health insurance for him for 2 years, so his "brain" illness and decline haven't been monitored by a professional since then. However, he just got Medicare, so I'm hopeful we may find some assistance.
For years now I've had many thoughts of him passing. Mainly because I'm the only person in his life who can/will help him and I've been so ill myself that I've lost not only the last decade to my own illness, but with the way things are going, will probably lose the upcoming decade(s) unless he goes.
However, the real reason I've had these thoughts is because he's turned so cruel. Not a day passes when he doesn't lash out at me, the one person who cares for him. He calls me names I'd never dreamed of, criticizes everything I do, judges whatever I say or do, and so on. I have to listen to him repeat the same 3 hr "conversation" over and over and am rarely "allowed" to talk. If I do speak, I'm constantly interrupted to the point of forgetting whatever it is I want to say. It's pretty awful. So, yes, I do sometimes wish he'd just go to sleep and not wake up.
Then I think of the devastation I'd feel, and am not so sure. And this is for someone I no longer know or am "in love" with. So, for those of you who've had such long and wonderful relationships and marriages, I cannot even imagine what that would be like. As for DH, he's so aware of what's going on and despairs non-stop. He hasn't given up, but the onus is on me to "fix" him. I cannot imagine the absolute despair and fear he feels almost 24 hrs a day. And still have a niggling hope that he'll get better. But, there will probably always be times I wish he could slip away. Or that someone else shows up and takes him off my hands.
Sorry that I've rambled. Today's a difficult one, but I'm really grateful I found this forum. And thank you for writing about a subject that I'm sure myriad numbers of spouses think about but can't discuss with "normal" folks.
When he was at home and was verbally and physically abusive to me.....yes watermusic, myself and other members here can really relate to those behaviours you are dealing with...I wanted it to be over....go into care, die, just make it stop!!!
Now that he is in LTC and it will be 2 1/2 months since placement and I am on longer living in "limbo" and am not "on" 24/7 as a caregiver my thoughts have changed some what. Quality of Life is now what I look at. As long as he is enjoying himself and can understand what is going on around him and knows who different people are then I'm OK with him living how ever long he has but when his quality of life is poor then that's enough...let him go sooner than later.
Also I am able to go and visit him...not every day but several times a week and not for long visits when it's after work and one day a week I take him out for lunch and run errands....but when I leave I make myself stop thinking about him and get on with my new different life, going back to work has sure helped. I really am enjoying the quiet time, alone at home, looking after myself and the dogs only. Here, this disease did not claim 2 victims!
welcome Watermusic. Sorry you had to join us but it is a great place to be when your spouse has this disease. A lady I met on FB about a year ago, whom we bonded instantly, died last month from the damage Lyme Disease did to her heart. She was fortunately dementia did not happen - it is also a nasty disease.
Thank you Amber! I really had no idea how many spouses have turned abusive until I started reading here. Yes, "just make it stop!" I wish I had the money to put him into LTC or any kind of place that'd feed and nurture him. We don't have the funds, nor would he stay in a place with "old people." He's too young and cognizant of what's happening. However, I cannot live with him and have found my own place 5 blocks away. That said, my place is the "safe house." His place is where our misery lies.
I'd do anything to see him enjoying himself again - I'm so happy that you have this! I no longer do the 24/7 caretaking, which only means he's on his own much of the time right now as a really sick person. He's now down to 130 lbs and is 6 ft - not eating enough. I simply started bottoming out this fall and he's incredibly angry about it (I've had health issues for 40 yrs). IT KILLS ME because I've had to pull away to survive. I have no place to put him in, and, as mentioned, because of his young age, he has no desire to be with other sick or older people anyhow. I understand that. However, I'm still stuck with being the only person who cares for him, and that's a responsibility I'm no longer able to handle all on my own. I say that, understanding that I will still have to be the one to take care of him - and it makes me panic on a daily basis. There is no one to take care of me - and I'm so health challenged myself.
I am so glad to read that you are able to move on and also have your husband in your life (on a better basis)! And that you're able to get back to work and get on with your new different life. I'm doing what I can, I guess, to avoid this taking 2 lives, as you put it. It was certainly headed that way. Thank you again.
Thank you Charlotte! Yup, Lyme disease is a tragic one. Causes almost every symptom one could have through its course. Dementia's been oft attributed to Lyme, but I'm sure there are plenty of "bugs" that can cause it. People lose their livelihoods, families, selves, etc. Either way, it stinks big time. I'm sure AZ has various causes, but the end result is the stories we can read here and experience elsewhere. I've been so deeply involved with helping DH survive (and finding ways to survive myself), that I'd forgotten how many others are suffering. It's horrible to know, but great to know. I know you all understand what I mean.
And I'm really sorry that your friend passed, Charlotte.
Watermusic, just remember one thing as your caregiving continues. All the good things are him; all the bad things are the disease. It will make everything so much better. And NEVER think about whether you can or cannot do a thing...just do it. If it needs to be done; just do it! You will be amazed how much strength and determination come from seemingly nowhere to keep you going.
Watermusic - I agree with Linda that it's not him it's the disease that is creating the anger.
I wonder....I think you are in the states so I don't know the system down there....I'm sure another member will be along that can tell you....with your illness being so bad that you can't look after him is there not social services that can help? If you are unable to give him proper care then could you get charged for elder abuse or neglect? From what I've read here I think you both need some help.
I think Amber has a very good point. If you are in the states, you can call the Alzheimer Organization for free help.
Go online to Alz.org and you can get a no to call someone 24 hrs a day. You sound like you do need help and should be Able to receive some . Reach out!
Is he by chance a vet? if so than go to the va. or Alz.org there should be help for you. Sometimes it is very discouraging trying to find it but it is there somewhere