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Spouse or Partner Caregiver Forum
Trapped, resentful and wanting out
I think it is the matter that maybe we might be judged on here, even though people on this message board are going through the same thing we are, if not worse. I for one, want to scream, why is this happening to us, etc.
I realize that this disease is rapid in my husband's family, so I should have not been surprised when this came about ten plus years ago...it could have been longer... I have been through hell, like many on here, many days, I feel frozen. I have since placed my husband, but had to move from another state to be near my oldest son and DIL, another move that I really didn't want to make, but felt there was no other choice in this difficult situation...I am homesick, my entire life has revolved around my husband for many years now.
In sickness and in health, those are part of the wedding vows and I plan to honor them, but my heart is torn apart. I miss someone being there for me, hugging me, giving me support..telling me everything will be okay, a partner in every sense of the word..I want to have someone feel in their heart, that I am their everything..now it is all lost to this disease.
I feel like a widow only my husband is still living. This disease is a slow torture on everyone involved, nothing quick about it, just watching your loved one go downhill never to return.
There isn't a day that doesn't go by, that I do not have tears rolling down my face. My husband will be in MC a year come this May, my finances are going downhill, and there is no happiness for a future with him anymore. I do not know how people do this, I really don't. It takes every ounce of energy you have on a daily basis, and our government, forget any help there. This disease is rapid, and it will get worse, and still no help...what is it going to take?
I put on a happy face, no one gets it unless you are living it..so I do not want to complain, that is why I come here.
This year has been a rollercoaster ride with my husband, so many issues with him and the MC facility. I have to be his voice when I see something that isn't quite right, and that is not me, but I have learned to do it...at the result of high blood pressure for me. I can see why caregivers get ill. Take care of yourself??? ..easier said then done, as we all know.
There are days, I could just sit and scream over this situation. Years of this, and how many more. I do not wish death on my husband, but if he knew this, he would be mortified as he was a proud man. It tears me apart to see him a shell of who he used to be..a man in diapers, not making any sense when he speaks most of the time, doing crazy things, putting many items of clothing on at once, peeing all over, and he no longer knows our four sons. I am still waiting when the day will come, that he no longer knows me either. He no longer knows my name, but I think he still realizes who I am...for now.
There are a lot of members on here that have it worse, who still have their spouses or parents with them and trying to take care of them daily, it is the most difficult job in the world. I found I could no longer do it, and had to place my husband..of almost 50 yrs... with a lot of guilt doing so.
In sickness and in health, those are part of the wedding vows and I plan to honor them, but my heart is torn apart........I am still waiting when the day will come, that he no longer knows me either. He no longer knows my name, but I think he still realizes who I am...for now.
Stop that!! STOP THAT NOW No guilt NONE absolutely NONE. Even the traditional wedding vows which I never made and don't believe in, don't require personal care.
I feel many things. Anger at the universe and at the unthinking heedless people who say worthless sh*t. I adored my wife. I was the sole caretaker for more than 4 1/2 years 24/7/365. It's not just "difficult" it's a killer job an absolute killer. So no guilt, none whatever Got that !!! Don't make me have to come upstairs again
This seems to be a very hot topic on here! It is interesting to see how people "really feel." We all need to stick together for support no matter how we think or feel at any given moment...without judgement.
i hear that! finally got him in day care 2x a week --- nice but i am still controlled by the situation. sold all that we owned - bought a 27 class c rv and travelled - i got worried on the trip and had to call it - we got back to the home area and he was diagnosed --- recently a woman that lives in the apt building we do - sat with me waiting for his bus to come back - said that a friend of hers talked about grieving - and when he crossed she knew that she was done with the grieving - i thought i was going nuts - but now it is making sure he does not escape - and i feel trapped - doing the simplest of tasks - taking pictures of 'chores' he needs to accomplish - step by step - we are able to walk to get groceries and take photos of all of our cupboards and what food is in it - have a list and when he argues at the top of his voice i show him the photos of what we do have --- he is getting angrier and angrier - no life is a piece of crap right now - he cannot be left to his own devices and do not have the $$ to pay for care to come an lease the load --- thankful we have 2 tv's as he spends time the bedroom watching and i have my space in the front room - i am alone not lonely - getting close to 80 so will quit driving and give my car to my grand baby --- not sure when this eases up - does it ever - my tongue is a stub - from biting it and not saying what i am actually thinking - thank you for the shoulder
I am so sorry to see you here. I remember your posts about your Father and how loving and caring you were with him. It saddens me greatly that you are facing this horrible disease a second time.
I am new to this group. I am home and not at the hospital because it is too hard to see my husband in his confused state. I am waiting for a reason bed, hoping I get a prefered one. Feeling so guilty. How do you spend time with your lo? What do you talk about? I am barely functional.
Meant rehab bed
Welcome welcome welcome
Here you will find comfort and advice from those who have been there and are going through this right now.
My lovely wife was the finest, most brilliant, most public spirited and most wonderful woman I could ever have hoped to meet. Physician, mother, scuba diver, "all around fun girl" and the love of my life for over 42 years. But that woman is gone and she left a shell behind. I honor her memory by treating the shell as well as I can.
Now I spend time trying to get her to eat a cookie on her own. A cookie I baked for her. I show movies of lions in Africa that she took, and try to keep her interested. I kiss her and hold her. It's a big day when I can get a real smile. She is 65.
I hate this disease with a passion. I also hate it when people just do not understand, and the people who make insensitive religious comments, and the people who peddle quack false hopes to the vulnerable.
I get by with a little help from my friends
I'm sooo glad this tread is still going. When overwhelmed I come here, reread, and let the pent up anger wash over & out of me.
My DH still hasn't received a diagnosis. The waiting is nerve wracking. The anosognosia, along with him thinking I'm the one with a problem (no I do not discuss anything with him or argue with him anymore) has started to be a great concern. He is very good at appearing 'normal' to those on Facebook. He's on for very short intervals, then rest up, then back on, then rest. He said he has talked to several ( in messages) about my problem. He blocked me last night after I asked him to delete a comment he'd made pertaining to me. How he figured that out I have no idea. But he's also been going to church alone after he told me he told our pastor I needed marriage counseling "but I refused to go". He has isolated me from the small community I was involved with due to his behavior. DH has 7 out of the 9 defining traits of narcissism (my father was so I knew what it is). I'd chalked his behavior up prior to seeing dementia symptoms to him being selfish (narcissistic) but IF he's diagnosed then how does one handle a narcissist with PWD? I know I'm rambling and this sounds confused, and you're right. I've been crawling out of my skin trying to live with this man who is intent on destroying me before/if he has an official diagnosis.
Has anyone else here had this dual situation? How do I talk to those he's already enlightened, when he hasn't had a diagnosis (yet/if)? Do I wait, then let them know the situation and hope they understand, or what? I've gotten to the point where I don't even know my own mind anymore. I'm walking on eggshells around him not knowing what's going to happen next.
I just joined this forum in an effort to get more educated and to see if there's others going through the same things as I am. I also am feeling trapped and feeling like I just can't cope anymore. I feel my health deteriorating and I feel like I'm not going to be able to physically cope. Should I throw in the towel or continue to a point where I won't be the same?
This is very hard for the caregiver and it will change you. Hopefully for the better. But it should not destroy you. If you are having health problems that is a very strong warning that, at the very least, you need respite. I know someone who swore to never place his wife, he now has permanent health problems.
In all of the support boards I frequent I find it very rare that someone with condemn someone else on placement. The only one I remember is a person who said she doesn't judge but she could understand why anyone would ever put their spouse in a nursing home.
I placed my wife 5 years ago, it took 2 placements. She has FTD. Her sisters were recommending it for a year before I took the step. My son needed the last 2 years of school to be peaceful at home and I wasn't managing very well, even with a paid caregiver while I worked.
Hi Incoping. Sorry you're dealing with this. I think it might be helpful if you gave others a little more information, since your profile really doesn't provide any. Information like the following might prove helpful: When was your spouse diagnosed? What was he diagnosed with? The ages of you and your husband. What are the specifics of what you're dealing with? Do you have anyone to help you? Any other information that you can share.
In my opinion, although I don't have much experience with the disease, people can help themselves with stress by knowing all they can about the disease, and steps the caregiver can do while giving the needed care, and making it as easy as possible on you. Teepa Snow has videos on youtube and on her facebook page. They are extremely helpful.
Finally, read all the posts you can on this forum. You will find a wealth of information and a lot of support. Best of luck to you.
You did the right thing by locking up the meds. You should not have to live like this, and I'm sure you will get other replies. Hopefully from people who understand frontotemporal dementia. Some of those behaviors might be common with that type, and those who have been through this will surely have some good advice for you.
Do you feel as though his neurologist is doing a good job with him? If not, it might be time to find another one. The suicide threats bother me, even if he says it's a joke.
. Should I throw in the towel or continue to a point where I won't be the same?
It is important to remember that "throwing in the towel" was the way a manager protected a fighter by stopping the beating that would kill the fighter.
Welcome to our difficult and bizarre world
I too feel trapped. Although you seem to have had a nice, sweet, caring husband before this terrible disease, mine was not. He was a good provider but always wanted the world and our lives to revolve around him and only him. This disease has only made it worse. He no longer wants anyone (children, grandchildren, family, or friends) to come to our home. [I have no idea how I am going to be able to bring a stranger into our home to help me when I am unable to take care of him by myself.] He is happy with it just being him and me, but I am not. I can't even talk to someone on the phone without him listening to every word I say, coming in every 5 minutes. or pouting and going to bed. I love my family and like having them around. It gives me a break from feeling so isolated. He gets upset at the littlest things, and thinks everyone is going to steal something, or when my I do get help from the family, he gets angry and claims they are one of my boyfriends or my buddy. He is like dealing with a 3 year old. I have already had my children and don't want to deal with another one 24/7 even though that is what life has become.
I spend 50% of my day looking for things people have "stolen", putting bandaids on sores he will not stop picking at, sitting with him listening to the music HE likes, and guessing what food (hamburgers or pulled pork) he will eat today without complaining. Then he complains he never gets to spend time and talk to me; at this point he is not able to carry on a conversation anymore, because he doesn't understand what I am trying to say. This is not the retirement I planned or dreamed of.
I think deep down there is some form of love there because why else would I have stayed all these years, but the love is not the same as it once was. I pray that once we are able to get the break we so desperately need and want, the good memories will come back and these horrible times will fade,
Dear Sisters 4
I have said this before I will say it again.
No one is "entitled" to a personal caretaker whom they can abuse and control.
Even if the abuse and control are a product of the disease.
We never believed in traditional "marriage vows" but the traditional formula always required you to "love honor and cherish"
I adored DW but even I had to say that if she acted in certain ways I would no longer be her caretaker.
See a lawyer and a therapist YESTERDAY
Dear Sisters, I agree with Crushed. You matter, your life and well being are just as important as your husband. Some people get swallowed up in caregiving because this disease is so terrible. Is it possible to enroll him in a adult day care program. Can his doctor prescribe some meds to help control his anger, pouting and moods? Is he on a antidepressant? Please try to find ways for you to relax and enjoy things. Medication might make like more pleasant for both of you.
Do you know about the directive method of dealing with a PWD? This might help you deal with him a little easier. Just putting some ideas out there. I truly hope you will find happiness and peace. I think we all deserve that. Good luck to you.
Thank you for the advice. He is on an antidepressant but it seems we need to increase it every 6 months. We have tried Seroquil but that just puts him to sleep for hours (12+) and when he wakes up things are worse, he comments that he feels bad after taking this medication. I have read everything I can get my hands on about how to deal with PWD, and everything is helpful. Even though his doctor has diagnosed him at moderately/severe he still does his best to make his OWN decisions and if you say something is white he will tell you no its black and stick to it. I don't argue with him about it because there is no benefit.
He would not do well in a daycare at this time (even if there was one here). His dementia has not progressed to the point that he needs someone to watch over him at all times (I don't know if that's a blessing or a curse). I do leave for the grocery at times just to get alone time, I am just tired and at a point of frustration knowing what the future holds.
Kudos 'sisters4 "for bringing this thread back up.
DW turned 61 on February 5 2017.. A few days later I find myself sitting in my Doctors office a broken man and in tears Keep in mind I spent 36 plus year on the assembly floor of GM.. The last 13 as a shipper receiver. In those days it was a mans world in there, and emotions were not acceptable.
My Doctor called the people at Ontario Health ( Here in Canada the only route to LTC is through a Dr.) A few days later on February 13 2017 , I placed my bride of 44 years (she was 17 when we married ) I did the necessary paper work and the staff hustled me out.
I drove home, and sat in silence 2-3 hours ?? All I can remember is thinking "is it finally over ?"
Since then carpet, couch, box spring mattress, all replaced. Bathroom gutted and renovated complete paint job whole house ...Chill Pills, Jack Daniel's, and Cigarettes all gone.
January 8 2021 EOAD won, DW had put up a h..ll of a fight.
I read all the posts here dating back to 2018.. I can relate to every single one of them.. Early on a much older lady said these words to me ...If you find yourself walking through hell ??? Keep walking.
There is a life after ..Hang in there .
There is no joy side to Alzheimer’s. Heartache and disappointment is more like it. My husband is being put into a facility today or tomorrow from the hospital. The ups and downs were ok to deal with at first. But, he is now in the hospital due to a blood clot after an operation. His mental state went down hill very fast and the doctor thought it best for him and myself to admit him.
He is on an antidepressant but it seems we need to increase it every 6 months. We have tried Seroquil but that just puts him to sleep for hours (12+) and when he wakes up things are worse, he comments that he feels bad after taking this medication.
These psychoactive medications need to be TITRATED for the best effect. This can take weeks. This is why in-patient observation is needed usually, although observation can be done at home at times. Consultation of a geriatric psychiatrist is necessary. The prescriber can't just say, "take this dose and come back in six months."
hvhartman and Laurention, thank you for updating the message boards with information about your journeys. For those of us just starting out (DH was diagnosed 10/20), it is both interesting and informative to read your posts. I can't tell you how many times in the past 9 months I've found myself crying and saying "I don't think I can do this", while others keep telling me how strong I am. Bottom line is I don't want to do this, I don't want to be a caretaker, I don't want to lose myself with I lose my DH, but I don't have a choice do I.
A friend and I talk about our lives post AD. It gives us hope that AD will not define and take our lives along with our LO.
So thank you for your thoughts and your insights. Us "newbies" appreciate it
CStrope I am with you! I don’t want to be here. I have had no real retirement. Every month I take over something new. I wouldn’t mind doing it all if I lived alone but I really resent that he has had a 20 year retirement with almost no responsibilities and I will never have one at this rate. He is confused tonight but I sidetracked him with a movie. His memory is about 1 minute so I hope he will forget what he was obsessing about. I dread the increasing confusion but the longer it takes to happen the longer our situation will last. This is a terrible disease and I want out but of course I will stay until the end. His first symptoms began in 2010 and he had to stop driving in 2018. On bad days I imagine that I will still be a member of this group in 2031. It makes me sound like a horrible person but I can’t help the way I truly feel.
..hvhartman ...Sorry for your loss, its such a long hard road...but it does come to an end.
More than 27,200 of us have viewed this post over the years. Twenty-seven thousand and counting. Clearly, this topic hit home for many caregiver spouses, partners, and other LOs.
I can tell you, it has been one of those weeks/months/years for me, for sure. And I've only been 24/7 line-of-sight caregiving for <3 years...since my DH's AD diagnosis that was too little, too late...the bottom had dropped out. Lately that 3 years feels like forever. And he is proving to be easy except when he is not. Most of you know a lot of our struggle...recent, recurring UTIs take us to another planet entirely.
In-home care has not materialized though I've interviewed 3 of 4 potential aides just as a formality. I will hire anyone who is even remotely qualified at this point. None have followed through and I really need someone to help. There is 30 hours of paid assistance weekly that we've been approved for and I could step outside to mow the grass, maybe meet a friend for a cup of tea (Ha!), I'd settle for just some basic "me-time"...taking a shower or a nap without fearing he'd escape again.
Thanks to McCott and everyone who commented, for the honesty. Yes, walking through hell these days, and you all remind me that we're all in the same stinking horror story. I will keep walking. No choice.
Thank you for expressing what I feel from day to day.
I often feel sick and tired of being understanding, we have gotten into some god awful fights (my husband and myself), he has dementia, I am treated to all kinds of insults, threats etc.
There are days when I wake up and don’t want to go downstairs to see what fresh hell has emerged.
I liken it to being on a roller coaster, an emotional one. I have my mom and a good friend to talk to, but honestly unless someone has lived through this, they don’t get it. Some people I won’t tell because the hushed sympathy is almost worse.
No, I didn’t sign for this, no one has. It is good to express our feelings, vent, cry, scream, whatever gets us through the day.
I miss McCott. She was a good friend to me and others on this board.
McCott literally broke her back caring for her husband. I hope she has found some relief from the pain and some measure of happiness.
I just noticed these posts, then realized they go back three years. Nevertheless, nothing has changed except our spouses. I can’t recall for sure when my husband was diagnosed with Alzheimer’s…7 or 8 years ago, maybe 9. It doesn’t matter anymore. The decline has been steady. He cannot remember anything for more than a second or two. He walks like an old man with very shaky balance. Yet, he has no idea what’s happening and refuses help from me or the aide I hired to help me care for him. Instead of gratitude, we get anger.
I’ve known my husband since we were teenagers. We’re now in our 70s. He was a professor at a top university and now he can’t even answer the phone. He wets the bed almost every night so I have to place all sorts of covers, mats, and other paraphernalia on the bed. He has to wear heavy duty pads day and night. I try to curb my anger, but it comes over me. I’ve learned to deal with it with the help of a counselor whom I met with online during Covid quarantine.
Sometimes, on these boards, we don’t want to scream and shout because we know that everyone who’s posting here is suffering the same day-in, day-out horrors that will only get worse. At least we know we’re not alone when we come here. That helps.
Hello everyone and Stuck in the Middle especially -
I don't come on this board very often anymore since my husband's death last September, so I was amazed to see my 2018 post resurrected. It was embarrassing to read it ! I must have been at a dark point, but as you all know, those kind of feelings are real.
How am I doing? Well, I'm still dealing with my broken back (caregiving accident -- my overdosed type 2 diabetic husband pulled me down in a hypoglycemic faint). After a spinal fusion surgery (L3-T10) last year, I had to have a second surgery two months ago, called spinal decompression. Still a lot of pain and now starting physical therapy, hoping I will recover enough to be able to travel again in the coming post-pandemic year. But travelling by myself doesn't seem all that desirable -- I did a lot of it in my 20's and 30's, but that was then...
Since my husband's death, I have been restless and depressed. I resigned my job in June 2020, thinking I would be caring for him for at least another year -- I was then 73, so I guess it was time, but without my teaching job, I am isolated and don't know what to do with myself. Of course the pandemic hasn't helped any of that. I do write some book reviews for journals in my field, but each one takes me forever and it is like pulling teeth to get it done and it does nothing to combat isolation.
I decided to look up friends to meet for lunch now that restaurants are open, and the first friend I met showed clear signs of early Alzheimer's. I couldn't believe it and by the end of lunch I was literally shaking. I got in touch with people closer to her -- she's a recent widow but it turns out her step-children are very close to her, which is good so she'll have a support system. Now I'm afraid to contact anyone else, as though I'm transmitting the disease somehow.
I'm making an appt with my MD to see if I can get some kind of uppers --I have no idea what kind of drugs I'm looking for -- something legal : ) I take anti-depressants but am lethargic and depressed anyway. I just don't know how to go forward with life alone like this. I feel like collateral damage, which I guess is a good way to describe all of us. Sorry to be a Debbie Downer right now, and my heart goes out to all of you who are still in the trenches.I feel that I "got off easy" with only seven years, compared to so many of you who are long-termers.
Take care, Mary
I am truly tired of being a caregiver. We went to a party for the 4th. Four couples and two men had Alzheimer’s and two didn’t. All four men came in and got drinks and sat and talked. The women had cooked everything and got all food ready to serve. Even the normal men sat there just waiting to be taken care of. I realize that we as wives enabled this behavior over the years but I am tired of it. I have told my daughter to never make this mistake. Expect equal participation. There are many men who do their share or more but none are in my group of friends.