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Trapped, resentful and wanting out
rodstar43
Posted: Sunday, February 25, 2018 8:40 PM
Joined: 8/29/2016
Posts: 49


mrsbob, one thing that has helped more than family and friends is communicating with those who "get it" and have experienced it.  I also found a small band of supporters on www.thealzheimerspouse.com.    they have a forum section. My user name is the same. There are others that look at both sites.
Rodstar43 from N.M.

Mzzz
Posted: Sunday, February 25, 2018 9:12 PM
Joined: 6/24/2016
Posts: 18


Iris L. wrote:
click on the purple button after the date and time of each thread--this will take you to the last post of the page.  If there are more than one page, you will have to click on the last page.
Example:
Sunday, February 25, 2018 8:07 PM 
Thank you!
Gig Harbor
Posted: Sunday, February 25, 2018 10:16 PM
Joined: 3/10/2016
Posts: 1053


Mrsbob, 

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. 


Beartracks
Posted: Monday, February 26, 2018 6:15 AM
Joined: 10/9/2014
Posts: 524


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.


Crushed
Posted: Monday, February 26, 2018 6:40 AM
Joined: 2/2/2014
Posts: 7289


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.  

 

 


spurlaut
Posted: Monday, February 26, 2018 7:25 AM
Joined: 10/10/2017
Posts: 4


THANK YOU ALL FOR THIS THREAD. This discussion has helped me more than any of the others. I am an evil person that is sleep deprived and resentful, often harboring dark thoughts.  Just knowing that it is normal makes it easier to keep going.  The DH I live with now is a dependent stranger, and I am not the Mother Teresa I should be.  Thank you for sharing...
Marty Cares 79
Posted: Monday, February 26, 2018 8:01 AM
Joined: 11/1/2017
Posts: 97


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


Marty Cares 79
Posted: Monday, February 26, 2018 8:06 AM
Joined: 11/1/2017
Posts: 97


mrsbob.I bought me the neatest lil carpet scrubber for under $100.00 Ck at Wal Mart


kellly
Posted: Monday, February 26, 2018 8:49 AM
Joined: 6/12/2015
Posts: 1131


heathelaine wrote:

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. 

Heathelaine, that is too funny. 
I feel your pain! For me, it has a lot more to do with me not feeling right about MYSELF to abandon him when he's so obviously in need of help but nobody else wants to deal with him any more - and for good reason. It's certainly not because he and I had years and years of love and a happy life together before this happened to him. We were divorced before his initial diagnosis, but I didn't have the heart to kick an 81 year old man out and we actually got along better as roommates than we did as spouses, because I had no emotional commitment to him or the relationship any more, so I could just shrug off a lot of the things he did that broke my heart as his wife. I am gradually disengaging from a lot of the direct interaction and oversight I was first doing when he went into a care facility too because I think he needs to develop other resources aside from expecting me to handle everything for him any more like he did when he lived with me. I felt my role was much more like a parent than a spouse, former spouse, roommate or even friend. He messes things up for himself and then wants me to fix it for him. You know how tiring that can be. 

mrsbob
Posted: Monday, February 26, 2018 9:05 AM
Joined: 2/9/2017
Posts: 21


I will check WalMart.  Thanks!
mrsbob
Posted: Monday, February 26, 2018 9:08 AM
Joined: 2/9/2017
Posts: 21


I will check out the other site.

 

Do I see that you are from NM?  Me too.


​NorthWoods
Posted: Monday, February 26, 2018 7:12 PM
Joined: 4/6/2016
Posts: 351


I add my thanks to you for this thread. It is so hard to say what we are really feeling. Somehow I feel like I shouldn’t feel the way I do. But I do. The other day I was thinking about labor laws and how this type work schedule is illegal so why should I have to put up with it. And the next person that tells me I have to do whatever is best for “him”, just might get slugged. Part of me doesn’t want anything more to happen and part of me wants it to happen quickly. I’ll be crushed, but I’ll get to sleep, and breath, and I so want that. I am smothering. I am working on placing him. He won’t want that. I don’t want that. But I need that. And I suppose that makes it best for him.  And yes, I have struggled with which meds do we continue and which might I stop, Pondered my legal options, and struggled to figure out how not to fill with resentment as my dream job dangles in front of me and I can’t take it because I’m a shut-in.
Stuck in the middle
Posted: Tuesday, February 27, 2018 3:38 PM
Joined: 6/4/2017
Posts: 2012


A recent thread was titled "Thinking of taking him out."  The poster was thinking of bringing a LO home from a NH but that isn't what I first thought when I saw the title.  Guess I see too many cop shows.
YS
Posted: Tuesday, February 27, 2018 7:15 PM
Joined: 12/10/2011
Posts: 428


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. 


kellly
Posted: Tuesday, February 27, 2018 7:24 PM
Joined: 6/12/2015
Posts: 1131


I've thought of that, too, and have actually been grateful for the anosognosia and short-term memory loss. It seems easier on him that way.
Ricki07
Posted: Tuesday, February 27, 2018 8:25 PM
Joined: 2/4/2017
Posts: 528


Stuck in the Middle, I would have thought the same as you!  LOL
Lillyclementine
Posted: Tuesday, February 27, 2018 10:09 PM
Joined: 2/27/2018
Posts: 1


I feel the same. My husband and I had four good years and then he became a different person because of vascular dementia. He thinks he is fine and everything is my fault. I want out, so I can have a life again. His family will hate me, the church will hate me, but I don’t care. They can take care of him and see how much fun it is!
Hischild77
Posted: Wednesday, February 28, 2018 12:02 AM
Joined: 9/16/2017
Posts: 112


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. 

 

 


SuzyP
Posted: Thursday, March 1, 2018 5:01 AM
Joined: 1/31/2018
Posts: 8


HHello all, and thank you so much for your honest and heartfelt responses to this difficult discussion.  My situation is similar to that of some of you who have not had the time or circumstances to build up a healthy balance in your "love bank".  My hubby and I have been on this journey for about 6 years ( formal EOAD diagnosis about 2 1/2 years ago (after a misdiagnosed of FTD six months before that.))  Things are relatively stable for now, but I can see the future fast approaching.  Hubby actually has an extended family, who haven't been very involved to date.  My question is this ... I was at my doc yesterday and learned that my last colonoscopy showed some of the "bad" type of polyps.  Has anyone considered refusing treatment (for oneself) in this circumstance?  If I don't need to support myself to a ripe old age, there should be plenty of resources to care well for hubby.  I'm not making any decisions at this point, of course, just considering options.  Thoughts?
Crushed
Posted: Thursday, March 1, 2018 7:19 AM
Joined: 2/2/2014
Posts: 7289


SuzyP wrote:
 My question is this ... I was at my doc yesterday and learned that my last colonoscopy showed some of the "bad" type of polyps.  Has anyone considered refusing treatment (for oneself) in this circumstance?  If I don't need to support myself to a ripe old age, there should be plenty of resources to care well for hubby.  I'm not making any decisions at this point, of course, just considering options.  Thoughts?

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. 


kellly
Posted: Thursday, March 1, 2018 10:32 AM
Joined: 6/12/2015
Posts: 1131


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.

{{{{hugs}}}}


gubblebumm
Posted: Thursday, March 1, 2018 3:01 PM
Joined: 7/12/2017
Posts: 1774


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


Mike&BrendaTX
Posted: Thursday, March 1, 2018 9:21 PM
Joined: 7/10/2017
Posts: 663


gubblebum,

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."

Mike


rodstar43
Posted: Thursday, March 1, 2018 10:40 PM
Joined: 8/29/2016
Posts: 49


gubblebum,

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
Posted: Friday, March 2, 2018 2:56 AM
Joined: 8/22/2017
Posts: 531


Marty Cares 79 wrote:

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.

**************************

To Marty Cares 79 -- I feel your pain.  We are in this for the long haul because we have no other choice.  I am lucky that I  had a good marriage and my husband is still not where yours is.  But I feel the weight of the future, the constant need to be solicitous and take care of everything else, not just him.  There was a child rearing manual that said it was OK to be  a "good enough mother" (not a perfect one) and my only goal is to be a "good enough caretaker."  I don't want prizes or medals, I just want to get through the weeks, months and years with some of myself surviving.  Not that I am very much into surviving, but we have a son and I cannot leave him alone, even if he is in his late 20's.  I have to be here for him when his father is gone.  I understand always feeling that whatever I do is not enough, and in our situations, nothing will ever be enough.  On a personal note, I don't know where I would be without anti-depressant medication.
Crushed
Posted: Friday, March 2, 2018 4:50 AM
Joined: 2/2/2014
Posts: 7289


Caretakers

 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 

 

 

 


Crushed
Posted: Sunday, March 11, 2018 8:40 AM
Joined: 2/2/2014
Posts: 7289


this is just a test I see no posts here later than my own March 2 post.   are some missing?  did people post and pull?
Gam3
Posted: Sunday, March 11, 2018 3:06 PM
Joined: 3/8/2018
Posts: 4


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?

 


Gam3
Posted: Sunday, March 11, 2018 3:46 PM
Joined: 3/8/2018
Posts: 4


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.

 


Daughter of a Marine
Posted: Monday, March 12, 2018 1:05 AM
Joined: 9/11/2017
Posts: 140


I am so grateful to all of you for your honesty and willingness to share your reality instead of remaining silent.  This enables others to lower their guard and also share their experiences with this horrific disease.  I just lost my 89 yr old dad to it last September, and for the past year or so, have been seeing changes in my 70 yr old husband.  He repeats himself, asks the same questions 30 minutes after I had just answered them, misplaces things (both his and mine), can't recall the names of streets he's been familiar with over the 40 yrs we've lived in our house.  He's also forgetting names of people and objects.  I've also noticed that he'll forget which button to push in the car to lock/unlock the car windows - something he's done a hundred times over the years we've had the car.  I find myself becoming very impatient with him when I have to repeat things I just told him or when I can't find a pair of shoes because he put them in some random place and doesn't recall where.  In reading your experiences, and in watching what my 81 yr old mom went through caring for my dad before he was placed in a nursing home 5 mo before his death, I am very fearful of what the future may hold for him and for us.  We will not be able to afford a MC or AL facility and I saw the pathetic care given by nursing homes that accept Medicaid patients which is what he would be.  For that reason, if this does continue to deteriorate, I will keep him at home as long as possible, until I am unable to care for him.  Although I raised 4 children and have 12 grandkids so have changed my share of dirty diapers, I will really struggle with his bathroom needs of it comes to that.  All I can do is pray and do my best to keep him healthy with diet (which he resists), vitamins and exercise.  Please pray for us as I will be praying for all of you.  God bless you all.
Crushed
Posted: Monday, March 12, 2018 3:38 AM
Joined: 2/2/2014
Posts: 7289


Daughter of a Marine wrote:
.  We will not be able to afford a MC or AL facility and I saw the pathetic care given by nursing homes that accept Medicaid patients which is what he would be.

You see a medicaid Lawyer NOW.  Depending on your state you may have more options than your realize. 


Ricki07
Posted: Monday, March 12, 2018 7:12 AM
Joined: 2/4/2017
Posts: 528


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.


Ricki


Queen930
Posted: Friday, March 23, 2018 11:32 AM
Joined: 1/10/2017
Posts: 16


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.  


Crushed
Posted: Friday, March 23, 2018 12:28 PM
Joined: 2/2/2014
Posts: 7289


Queen930 wrote:

 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. 


GA-Mom
Posted: Sunday, March 25, 2018 2:59 PM
Joined: 2/17/2017
Posts: 145


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. 


 
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