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Spouse or Partner Caregiver Forum
Trapped, resentful and wanting out
Regarding cleaning: we rented a beach house once. I guess the owners got tired of trying to clean carpeting. They had pulled up all the carpeting and painted the sub floor in a sea green. They had lots of throw rugs but the painted subfloors would have been super easy to wash. If you did that, the subflooring would not get ruined with urine and stool odor and you could recarpet at a later date.
My first thoughts were this is venting but I grew angry about what was being said and was going to say something about it here at the end.
After reading everyones responses I must admit I feel better about my own situation. Believe me Im in no better place than any of you but misery does love company.
I am guilty of feeling happy for those who have posted that their LOs have passed on. I know I will cry like a baby when DW passes. Keeping strong will not matter once she is closer to the end. The tears will over flow the dam and flood gates will be opened.
DW is 63 and on the cusp of stages 6&7. Thank You everyone for keeping this real. We all have those thoughts we all have those very very irritating moments and wish things were totallly different and I want to Applaud you all.
I missed this fine discussion because I spent the entire day in the Emergency room with DW.
They could find noting to explain her total unresponsiveness in the morning.
Why do we do this? I have no religion and vows are a meaningless concept when it comes to care taking for the brain damaged. Why do we do this? Near as I can tell I take care of DW in sheer gratitude for 42 unvarnished pleasure in her company.
Do I feel trapped YES
Do I want out -sort of....
Do I feel resentful. No not for a moment, it is not her fault. but I am angry at the universe all the time.
McCOTT,Ohh thank you for writing the post you did.I have been in tears all morning wishing life like this would just be over.I am so weary and depressed.So tired of not having a life.So tired of trying to get DH up after he sleeps 20 hrs. So tired of begging him to bathe.Tired of trying to get him to eat or take his meds
I want so much to be a good caregiver and he makes it almost impossible,I am so frustrated today and ready for it to end,Your post told me that I am not alone in these thoughts, thank you
mrsbob.I bought me the neatest lil carpet scrubber for under $100.00 Ck at Wal Mart
Kellly: I swear I was married to his twin brother! A great deal of what you said, I too have been through. I take care of my Ex. Sometimes I think, Why am I here? I divorced this man years ago!!. There is something about me that I just can't abandon him now.. Slave.
I will check out the other site.
Do I see that you are from NM? Me too.
We survive because we still hope for better days, sometime in the future. We endure because we have no real choice.
Personally, I dream of a visit to a spa. That’s my big dream for the future. The future. What will i do “after”? I have a feeling that I will be more lost than ever. Without purpose. An old lady with nothing to look forward to, taking up space and resources. No , I will not do myself in.
So, like many here, I live an automaton’s life. Only today exists.
I feel sorry for my husband. I know what I’m going through, but I can’t even fathom what he has been suffering.
Lillyclementine, first..WELCOME. I feel your pain. I too have been married for a short few years. My DH's symptoms started to be pronounced a year-2 yrs ago. In all actuality, we had a month of good. Now, my DH is where yours is.
This is a great community. There are many veterans/soldiers/experienced caregivers who not only support, but offer suggestions. Even though I'm fairly new, I suggest you read all the links for caregivers, the posts & comments, and you can go into the archived section to further your reading.
I too want to give up on this man, but he has been estranged from his family for 20 years and more, and has no friends, so he's stuck with me. I still love him, Unfortunately, yet it's diminishing due to our roles changing.
Others will have more to help you, I'm sure, but he probably has Anosognosia.
Please please please get mental health and cancer advice NOW. I served as an ethics advisor on colon cancer screening at the national cancer institute. even bad Polyps if properly removed eliminated the cancer "in situ". You just go on a more rapid Colonoscopy screening.
Depression over the stress of this disease is largely due to the isolation and lack of support for caretakers. It is a product of the "I've got mine f*ck all of you " attitude that dominates our national political discourse.
We brainwash people to say that if someone needs help they are freeloaders, rather than just people like us who have been dealt a terrible hand.
Get help . you deserve it, So does everyone.
Suzy P, I totally agree with Crushed's advice. Suicide by someone else's Alzheimer's is too sad. Get some counseling, maybe meds for depression, but don't give up and throw in the towel. Yes, caregiving is hard, but life is long and can be enjoyable again. Colon cancer caught in the early stage like it sounds like yours is, is not the death sentence it might have been years ago. Get it treated, get some mental health counseling and stick around. Maybe some worse days are ahead, but I'd be willing to be some better days are ahead yet, too.
I was on another group on facebook, and there were sooo many posters who would say "oh you should feel blessed to be helping" "or this is God's plan" or "i love taking care of my DH for a decade and wiping his behind and changing diapers" and they meant it. They told others they needed to embrace the circumstances and it was wrong to be irked or have attititude about anything. And being mad was wrong. Well, I lasted about two weeks. One lady told me she was praying for me so I wouldn't be angry and I should be grateful I can take care of my mom.
I took my granddaughter out to, and when I babysit her, 30 hours a week, when we go on adventures out of duty I take my mom. Today, weather was bad, so mom stayed home. OMG it was sooo much lighter and less stressful and I wasn't on edge. And my mom isn't that bad yet, at least physically. Guess that makes me the bad person for enjoying not being around my mom and having to think about her more than I think about my own husband, my granddaughter or myself.
Oh and the other thing they kept bringing up was well, now its YOUR turn they took care of you when you were little, so you must sacrifice all for them. Nope, not supposed to work that way
Sadly, we all seem to hear all of those comments, whether they are from people who actually think they're helping or from people who just want to tell us how to live. They certainly don't seem very empathetic. In fact, none of them have the first clue as to what it's like to be a caregiver. This is just not their world at all.
Maybe the answer is to paraphrase the old Cherokee proverb: "You won't understand until you walk a mile in my shoes."
Well, are you really ready for eternity, have you done all you wanted to do yet?
My wife has two terminal diseases, I have had one for 49 years. Should I give up, Noooooooo. I want to be there for her last breath. That was my PROMISE. A couple "bad" polyps and you are ready to take the "easy" way out. You are most likely got more fight in you than you realize. Do something about. If you go down, go down swinging...........
McCOTT,Ohh thank you for writing the post you did.I have been in tears all morning wishing life like this would just be over.I am so weary and depressed.So tired of not having a life.So tired of trying to get DH up after he sleeps 20 hrs. So tired of begging him to bathe.Tired of trying to get him to eat or take his meds. I want so much to be a good caregiver and he makes it almost impossible,I am so frustrated today and ready for it to end,Your post told me that I am not alone in these thoughts, thank you.
IMHO You are entitled to feel as angry crapped on abused and mistreated by the universe as your like.IMHO if Anyone tells you this is "gods plan" IMHO you can tell them they must worship a really evil nasty deity who demands human sacrifice to satisfy a twisted pathological blood lust. Or perhaps Manichaeism explains it. from Wiki
Manichaean theology taught a dualistic
view of good and evil. A key belief in Manichaeism is that the
powerful, though not omnipotent good power (God), was opposed by the
semi-eternal evil power (Satan). Humanity, the world and the soul are
seen as the byproduct of the battle between God's proxy, Primal Man, and
Satan. The human person is seen as a battleground for these powers: the
soul defines the person, but it is under the influence of both light and dark.
This contention plays out over the world as well as the human
body—neither the Earth nor the flesh were seen as intrinsically evil,
but rather possessed portions of both light and dark.
Natural phenomena (such as rain) were seen as the physical
manifestation of this spiritual contention. Therefore, the Manichaean
worldview explained the existence of evil with a flawed creation in
which God took no role in forming but rather was the result of Satan
striking out against God
In any case believe whatever you feel like. But no one else can tell you what to believe.
Some of you are also entitled to feel crapped on by your spouse before they got this disease.
My spouse was wonderful and I am happy to make sure she gets the best care I can find and do. But she is no longer any kind of "partner". One person can't play tennis.
If I get sick she is not going to be there for me
The bottom line is that you are entitled to feel trapped by the disease, resentful at the universe and want out. If you stay you are are a caretaker. That is why caretakers are heroes , real heroes. every single one. take a medal
Hi I am new to the site just learning how to use it. My story I am 59 years old and a caregiver to my husband that has FTD now 3 years . I feel like we live groundhog day each day. Our relationship isn't the same all days seem to be more aggravating dealing with his disease than trying to make the best of the time we have together. So much has changed he no longer can drive or work. I feel like I have 2 roles the husband and the wife of the relationship. Anyone else can relate?
I wanted to make sure I am posting correctly? Caring for my husband with FTD for 3 years now has left me feeling very alone. The most frustrating thing is not having the partner that you married and your marriage has changed you don't do the same things you did before and you were thrown into retirement before you really were financially able to retire We have never had any pets but now we have a little Maltipoo that is a puppy that has been a good companion for both of us. Life can change in a heartbeat has what I have learned in my journey don't take anything for granted.
You see a medicaid Lawyer NOW. Depending on your state you may have more options than your realize.
Crushed...once again thank you for all your legal advice. It's been a tremendous help. As I previously mentioned, I have taken notes and do understand more clearly.
Paperwork is mostly done.....a trust will be set up at some point. DH is currently a solid stage 4.
Oh my goodness!!! This is so me. So you are not alone and not a bad person. My husband has early onset Alzheimer's. I think he is more in the moderate stages at times. He can do things for himself except shower. He hasn't showered in months. He has fallen out of bed a couple of times this week and wants me to do everything for him. I gave him the choice to do things for himself or I'm calling 911 to have them take him to the hospital. I too have prayed that God would just take him home. I get angry all the time. He pees in the sinks and trash can because he doesn't feel like walking to the bathroom. Even when he is in the bathroom, he will pee in the sink. I'm so exhausted. We can't afford to put him in a home but if I can get him to a hospital, I'm hoping to at least get some help. I just can't do this anymore. I have to work full time and travel.
It is hard to remember what my husband was like before all this happened.
He pees in the sinks and trash can because he doesn't feel like walking to the bathroom. Even when he is in the bathroom, he will pee in the sink.
You need help but thinking this way is a complete mistake. In Dec 2016 my wife, a physician, presented me a fully formed bowel movement and asked "what do I do with this"? You just have to throw out the window any idea that the person with dementia thinks in any formed rational way. Their brains simply no longer work.
My husband is only in moderate stages - he is 69 and was diagnosed in November 2016. I am already resentful and scared of how it's going to be in the years ahead. I feel like I should take his Medical Directive to the local hospital and make sure it's on file. We both signed our directives to say that if we had Alzhiemer's and got cancer, to withhold cancer treatment. I feel like if he gets ANYTHING, to withhold treatment.
I am still working full time and thankful for that. I am only 65 and healthy. I get angry sometimes, or more sad, when I see other women my age with their healthy husbands doing fun things. My husband mostly wants to be home or at his local sports bar where he feels comfortable. I get that. But I have to make all the arrangements whenever we do anything or we wouldn't do anything.
I am thankful he is mostly cheerful and not angry or doing crazy things. Yet. We'll see.
But on the weekends when I get up before him, I pray he passed in his sleep. I pray he will have a heart attack and pass on the golf course. I pray I will come home from work and find he's passed. I do NOT want either of us to go through what I see happening. Thankfully I will have the means to put him in AL when the time comes. I refuse to change diapers and all that c****. I want a life in spite of my DH having this awful disease.
If that all makes me a bad person, so be it. For now, I'm doing a lot for him and making sure we both get out and have some fun. But more and more he is slipping away. And I get more scared. Thankfully I have supportive family, friends, neighbors and co-workers.