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Trapped, resentful and wanting out
McCott
Posted: Wednesday, February 21, 2018 10:33 PM
Joined: 8/22/2017
Posts: 531


It strikes me that people on this list are all very "nice" about their deteriorating spouses.
Of course, it's "not their fault" etc, but it seems bizarre that everyone is so polite and restrained. I feel more and more like just walking out, disappearing.  Of course I can't, I am a slave to this situation.  But this is NOT the person I married, he is more and more of a stranger.  And I am stuck with an increasingly stupid, incompetent and useless shell of a human being.  I do not see the point of his continued existence.  And I don't want to hear from the severe and moralistic day2night person who always sounds like she's about to call the authorities.
LastFire
Posted: Wednesday, February 21, 2018 10:47 PM
Joined: 2/26/2017
Posts: 159


I hear you.  I have been "there" so many times in the last 13 years.  I have not felt "nice" and I certainly did not want to face life with this stranger.  I do not know why I stuck it out.  He is now in memory care (4 months) and I am now happier.  Your post has made me think of why I held on:  I would not have been able to look at my sons in the face.  I could not put the burden on them.  My husband's father had dementia for 9 years.  That experience changed our marriage, husband's career path, location for education, and on the changes went for 9 years...no vacations, no time alone, etc.  I may not care as deeply for my husband but I will never put the burden of caring for him on my children.  I do not have any words to make your life better.  Dementia is the most terrible disease in the world.  But I do understand.  Can you find some help:  daycare, sitters, or relatives?   I have tried to build a life without my husband.   I go to lunch with friends, do birding, volunteer with HOA, etc.  I truly miss the wonderful man my husband was 14 years ago but that person is not here now.  I would never hurt him but I am not one to think I am "blessed" to have the opportunity to care for him.
McCott
Posted: Wednesday, February 21, 2018 11:15 PM
Joined: 8/22/2017
Posts: 531


To Last Fire -- I can hardly imagine what you've been through -- first your husband's parent, then    THIRTEEN YEARS with your husband's decline.  It is amazing that you are still walking and talking.  I am only five years into this, and some of the scarier stuff is only happening now and then.  Plus, like you, I do remember the great person my husband was, but sometimes that makes it worse -- what a loss. I know we have no choice but to hang in there, and am glad that our son is adopted so he doesn't have to live with the fear of inheriting this dread disease.  I hope there will be a cure for another generation, but it won't come in time for us.  Thank you for your kind message.
Blondie49
Posted: Wednesday, February 21, 2018 11:16 PM
Joined: 2/8/2017
Posts: 447


I know that feeling of being trapped.  I also know how you feel and I don't blame you one bit.
We didn't do this to them , yet we are the one's stuck here day after day.  
I hope you found a little bit of peace after the vent.  I know it always helps me.

I also like your reference to being a slave.  So that's what I am.  I put him on the toilet , or change him.  Shave & get him dressed.  Shower him, Feed him and make all the meals and clean up afterwards.  Yep , you are right.  I'm a slave.

But,  I know,  I would rather be me than him.  My heart breaks when I see what he has become.  this extremely, talented man.  It is such a shame.  How could I feel anything but regret and sorrow for him.  

Blondie


rodstar43
Posted: Wednesday, February 21, 2018 11:51 PM
Joined: 8/29/2016
Posts: 49


Ladies, some of men can feel the same way. First, my motherr then 4 years before she died my wife started this same dimentia path.  Must be catchy.
Trapped, slave, never ending days, questons. Thank goodness she has a rare incurable cancer now. which one gets her first?  55 years of our marriage down the drain. It takes all the strength i can muster when she touches me now not too pull away.  Come on 6 or her angiosarcoma.

I really hate being in this state of mind. Let me out Now!!!


Lillabet
Posted: Thursday, February 22, 2018 7:36 AM
Joined: 12/25/2017
Posts: 23


I totally understand.  We have been on the FTD nightmare ride for over 13 years. This angry, mean, nasty man is not the man I married. I am tired of walking on eggshells, dealing with angry fabricated tirades, trying to find missing items, laundry, etc. It's so very hard taking care of a stranger that I really don't like.

I have tried to maintain who I am - I will NOT let this disease take me, too. I am only 58, and want to be that little old lady who rides her bike through town when I am 80. I dream of the day when I will get my freedom again. 

I have never admitted this to anyone, but on the really bad days, I keep wishing this were over.  My husband is already gone. I know the man I married would never wish to live like this either. 

We can't be bad people for thinking like that, can we???


kellly
Posted: Thursday, February 22, 2018 8:14 AM
Joined: 6/12/2015
Posts: 1131


McCott, check out some of the Caregivers Forum. There are several people there who feel trapped, too. I know, because I was one of them. I was caring for my EX husband, and he was my ex for a lot of reasons. I cared for him because he had no one else who would - and that for lots of reasons, too. He developed FTD, which made an already "difficult" person and difficult relationship 10 times more so. FTD is expressed by an increase in self-centeredness, lack of empathy or concern for others and an extreme and single-minded focus on what the person with FTD wants to do, combined with loss of ability to make healthy judgments. Those characteristics followed after a couple years of "early symptoms" like extreme rages. It was no fun, I tell you. And I've even been called out for not putting myself in my LO's place (as IF). Only he stopped being my LO about 5½ years ago, a couple of years before his initial AD diagnosis, because of his single-mindedness and lack of concern over my well being. I let him stay with me and became a very reluctant caregiver because I wouldn't have felt right about myself to abandon a person who was obviously not able to manage without some help and support and no one else wanted to be involved at all. 

I think people who have a deep history of a loving, caring, considerate relationship with their LOs, who truly are well-loved experience something completely different in their caregiving relationship than people whose pre-dementia relationships were fraught and unhappy before becoming their caregivers. We stepped up because we are caring and responsible people and didn't just want to walk away from the person when they needed help the most. But the pre-dementia relationship is the starting point for dementia care, and if it was difficult going in, it's not likely to get a lot easier as the dementia progresses. 

You might escape having the authorities called, but some people have had their posts taken down because someone's very sensitive sensibilities and highly restrictive personal moralistic judgments have been offended. Maybe this entire thread will be considered "offensive" to someone and the whole thing will be taken down.


MrToad
Posted: Thursday, February 22, 2018 9:03 AM
Joined: 7/13/2017
Posts: 444


McCott:

Even usually-cheerful “look-for-moments-of-joy” toads have dark moments, even dark days. I have shared mostly the bright stuff, not so much the dark stuff with the gang here, but I applaud you for going ahead and giving vent to your very human thoughts and feelings. These should not be censored, but recognized as demonstrations of humanity.  We here try, but none of us really are superheroes; in the end, we are just “human beans” as my DW would say, and we are entitled to be occasionally angry, resentful, p.o.’d and more than a little depressed, and venting those negative feelings into cyberspace here I believe is useful and healthy. It is far better than to try to keep them bottled up, with potentially dangerous results. Flinging electrons in anger is better than any physical alternative.

McCott, none of this is fair, it is not what you bargained for, it was not in your game plan, and in a just world you should not have to deal with this terrible situation one more month, one more day.

In one sense perhaps it does not make it any easier to know that all around you, perhaps on the next block, likely in your town, certainly in your area, and definitely all around the country there are other ordinary souls like you and me and the others on this forum who are going through variations of the same nightmare you are going through. But in another sense, while you are still faced with your own problem, I hope you do find it helpful to know that you are not alone in the wilderness. We too are struggling, but we all try to help each other the best we can. We understand; we’ve got your back.   

 

 


Blondie49
Posted: Thursday, February 22, 2018 9:24 AM
Joined: 2/8/2017
Posts: 447


Rodstar,

Don't you hate what we've become?  We are what's left of the marriage- the caretakers. And it is hard. Really hard.  No one knows but us. there is safety in numbers.  Stay strong and I will too. tomorrow will be a very difficult day for us.  His assessment into the care facility. I get to see all the things he can't do anymore.  It will be very difficult.  Yet, I know, I need help. Physically and mentally, I can't do it anymore.

You take care of yourself,

Blondie

 


Blondie49
Posted: Thursday, February 22, 2018 9:28 AM
Joined: 2/8/2017
Posts: 447


Lillabet,

I don't believe we are bad people.  We are just ordinary people , trying to do the impossible.  Live in a life that is bizarre and unreal.  How can you communicate with someone that has no idea what we are talking about.  It's like we are Alice in Wonderland and fell down the rabbit hole to this unreal bizarre reality.

Stay strong, we are all heroes ( as Crushed would say)

Blondie

 

 


Eileen72
Posted: Thursday, February 22, 2018 9:40 AM
Joined: 6/10/2017
Posts: 312


McCott, It might appear that we are “nice” but in the darkness I have felt just as you do.  There are no words for me to discribe my anguish, fear, frustrations and pain.  Maybe you are saying what oh so many here have felt.  I applaud for you saying it out loud....Everything about this is horrid, so very horrid!


Blondie49
Posted: Thursday, February 22, 2018 9:42 AM
Joined: 2/8/2017
Posts: 447


Mr. Toad,

You are 100% correct.  Our writings, rantings, feelings should not be censored.  If it offends someone, then they don't have to read it.  We need a voice , we need to have our voices heard because we need to know there are others just like us who have these dark, unheardable feelings.  We need to see our words and see the responses.  There are breaking points in all of us.  And then the anger and resentment take over.  It's okay.  We have to vent and here we all know and understand where these feelings are coming from.  It's sad we have to be here, yes, it is. If we need to vent, rant whatever, our voices need to be heard.  And it feels good, to know there is someone else feeling just like us.  

 


TayB4
Posted: Thursday, February 22, 2018 9:45 AM
Joined: 8/8/2014
Posts: 886


My husband was diagnosed in 2016 and is probably stage 4, sliding into 5. Given that, we have been on this horrible journey for 8 years. That's how far back when I started noticing changes in his behavior. Anger, paranoia, memory loss, personality changes. He is only 51. We have two (now) adult children who were in middle and high school when this began. I am NOT always nice and kind. I think terrible thoughts, and whisper all kinds of nasty words under my breath and out is his hearing. It is what helps me to survive. It gets my anger and frustration out. I also am working hard to have my own life separate from this disease. I saw this disease take my father-in-law before my mother-in-law, who was the one that was sick. I can't let that happen to me
bhv
Posted: Thursday, February 22, 2018 10:33 AM
Joined: 2/3/2018
Posts: 101


Thankyou McCott. I am having the same thoughts. Funny, I just remembered that a friend of mine, whose husband doesn't even have dementia, has what she calles "Pillow Days".  As in, when he is sleeping, using the pillow for something it was not meant to be.

I wrote a longer story, but couldn't bear to see it in print and erased it. But writing it helped me try to bring some of my thoughts into focus.  I am going to try Adult Day Care.  Last summer, when I visited, I was sure he would not tolerate it.  Now I think he might.  I could go play golf all by myself.  It would be a costly day, but what the heck?  I am weaning myself off the antidepressant.  I don't think it has been doing any good and I already know I cannot tolerate a higher dose.  Already tried other kinds and can't tolerate them.  I think it is going to be OK without them.  For one thing I would get angry every day when I took the damned thing because why should I be putting drugs in my body when he is the one with the incurable disease?  I am throwing/giving things away if I don't like them.  I like destroying things! As in, when something has outlived its usefullness about 20 years ago and has been sitting in our yard or house all that time, it is cathartic to destroy or obliterate it before tossing it in the trash.  I am fixing things that need fixing.  I no longer ask his opinion.  He can't give it anyway and even if he could I no longer am interested.

I just took a look at the ALZ Assoc Caregiver Center (ad at the top of this page).  What a mistake.  There is a section there about all the loving activities you can plan and constantly adjust to keep your "Loved One" occupied and feeling loved and valued as a helpful member of the household.  Well........................................ It is time for Day Care or in Home Care.


jfkoc
Posted: Thursday, February 22, 2018 11:05 AM
Joined: 12/4/2011
Posts: 20765


My first post started with "does anyone else just want to run away?" It was not the only time I felt like running away.

Crazy thing was I felt that running away meant that I had failed myself. I don't know why but I was not going to live with regret for not doing my best. It was selfish but true.

Was my best great? Not always...lol but it was my best.

You are so understood. Come here. Talk it out. Do not push your feelings down where they can grow. Scream in the shower or in the car. Cry...sob. 

This is a seriously hard, sometimes impossible journey. Do not take it alone. 

Let us walk by your side.


elainechem
Posted: Thursday, February 22, 2018 11:25 AM
Joined: 7/30/2013
Posts: 6043


Oh, trust me, we're not all that nice behind closed doors. I often feel trapped. As I was telling my counselor last week, this disease just takes too darn long! My parents both died of cancer. It wasn't pretty, but it had the benefit of being relatively fast - a couple of years from start to finish. If I could choose between death by cancer or death by dementia, I'd choose cancer every time. And how many of us wish our LO would have a massive heart attack or stroke and put all of us out of our misery? 

As soon as it became apparent that hubby couldn't be left alone safely, I began hiring caregivers to stay with him so that I could get out once in awhile and save my sanity. I find that getting away really helps reduce depression, anger, and resentment. Nobody can do this alone.


kellly
Posted: Thursday, February 22, 2018 11:58 AM
Joined: 6/12/2015
Posts: 1131


I was actually afraid when my ex husband was sleeping 20 hours a day, that he would die and I would come home from work one day to find him dead. I was really afraid of having that happen. I mean, what would I do? I guess call 9-1-1 but then I'd have all the cleaning things up to do ... and then have to be at work again the next day. I just thought how hard it would be on me to come into the house to find him. I've never been around anyone right when they died before and I was scared about it if it happened like that. Or if he was "sleeping" and wouldn't wake up, because he was getting harder to rouse, and that worried me, too.
Ricki07
Posted: Thursday, February 22, 2018 12:00 PM
Joined: 2/4/2017
Posts: 528


Great post McCott.....I often wondered the same....even though my DH is  MCI/ ES and quite functional.  He's still a sweet, kind and gentle  man and if he remains that way, I can most likely hang in there.....eventually with help.

My undoing would be major/double incontinence.  I physically could not handle what it takes at that point.....but being in our 70's, I often wonder if a major heart attack or stroke will take him first.  It would definitely be a blessing.  Noone should have to suffer ( or watch their LO suffer) through the later stages. 

Ricki


Twoevas
Posted: Thursday, February 22, 2018 12:04 PM
Joined: 10/8/2017
Posts: 155


This is a great thread. I took screenshots of almost all the comments just for future validation. It's great to learn all the ways to help our loved ones and to educate ourselves on what they are needing and feeling, validating them, caring for them etc but it is equally important to put out there how sad, difficult, depressing, isolating, surreal, exhausting, frustrating, overwhelming etc etc this job is. I look back and honestly don't know how we have survived the last four years. Mom was just admitted into hospice. I know that it will get way worse before it gets better. Thank you all for getting real about what this feels like sometimes and the toll it takes on us. I'm am right there with you.
Crushed
Posted: Thursday, February 22, 2018 12:42 PM
Joined: 2/2/2014
Posts: 7233


McCott wrote:
It strikes me that people on this list are all very "nice" about their deteriorating spouses.
Of course, it's "not their fault" etc, but it seems bizarre that everyone is so polite and restrained. I feel more and more like just walking out, disappearing.  Of course I can't, I am a slave to this situation.  But this is NOT the person I married, he is more and more of a stranger.  And I am stuck with an increasingly stupid, incompetent and useless shell of a human being.  I do not see the point of his continued existence.  And I don't want to hear from the severe and moralistic day2night person who always sounds like she's about to call the authorities.

What you see her is called selection bias.  Gold and Bitcoin boards are fully of folks who made money on them not those who lost their shirts.  But rest assured that you opinion and experience are as valid as anyone's.

 



extex
Posted: Thursday, February 22, 2018 12:45 PM
Joined: 8/23/2014
Posts: 625


A great thread here, and boy, do I know how you guys feel.  Every day brings a new experience,  a new problem.  I need to run but I am tied with an imaginary chain to the nightmare.  On the flip side, the coin asks “ if not me, who?  After seven years following formal diagnosis, which really extends several years beyond that, I am beat to a pulp, resentful and want this to end.  That is the scariest part for me, not knowing how long this will continue, days, months or years.  How long can I take it?  I can’t remember ever giving up on anything before but this time the road may be too rugged and too long.  If I should elect MC for her, would either she or I be any better off?  Knowing already that her resentment and my guilt would be overwhelming, would it just make matters worse?  There is solice in knowing that placement can be undone if it is not working, however, second guessing a decision usually is the wrong thing to do.  Just getting this out helps a little bit right now.  Maybe it will help a lot by tomorrow.
rgregoryb
Posted: Thursday, February 22, 2018 12:47 PM
Joined: 3/27/2016
Posts: 139


AND I thought I might be the only one. My father had Alzheimer's, my mother in law had Alzheimer's, my wife is in (diagnosed) third year of Posterior Cortical Atrophy and Corticobasal Degeneration. 

What I have seen has cemented the idea that if I get diagnosed with dementia I will kill myself. I will never put any family through this.


Crushed
Posted: Thursday, February 22, 2018 12:51 PM
Joined: 2/2/2014
Posts: 7233


I just feel constrained to add that I am astonished and amazed by the toughness and resilience and resourcefulness of the people here.  It always brings to mind a poem from WWI

Dreamers

Soldiers are citizens of death's grey land,
Drawing no dividend from time's to-morrows.   
In the great hour of destiny they stand,
Each with his feuds, and jealousies, and sorrows.   
Soldiers are sworn to action; they must win   
Some flaming, fatal climax with their lives.
Soldiers are dreamers; when the guns begin
They think of firelit homes, clean beds and wives.
I see them in foul dug-outs, gnawed by rats,
And in the ruined trenches, lashed with rain,   
Dreaming of things they did with balls and bats,
And mocked by hopeless longing to regain   
Bank-holidays, and picture shows, and spats,
 
 And going to the office in the train.

You ALL have the right to scream, cry, vent, complain, swear, and do ANYTHING absolutely ANYTHING that lets you survive this nightmare.   

 

 


Mike&BrendaTX
Posted: Thursday, February 22, 2018 4:17 PM
Joined: 7/10/2017
Posts: 663


All of the above, and remember... you never get a sick day off.

Mike


chihuahualady
Posted: Thursday, February 22, 2018 7:12 PM
Joined: 12/30/2017
Posts: 69


All the above thoughts are mine, too. I often wonder why the nursing homes do such a good job administering the BP meds and the heart meds , and every year the flu and pneumonia vaccines. I mean, have not the folks reached a point when nature should be allowed to let them go naturally? I know it is all about keeping one pain free and comfortable, but all dying has its pain and suffering.  I feel we have reached an age when death is delayed , and can be so drawn out. Of course, most people now have living wills, but that doesn't really help dementia patients who have suffered for 10 -13 years.  I guess these thoughts make me a heartless, evil person.
rodstar43
Posted: Thursday, February 22, 2018 10:41 PM
Joined: 8/29/2016
Posts: 49


Thanks Blonde, you know what jumped into my my mind as I read your post?

A title for a documentary movie "THE CARETAKERS"would have 5 or 6 stars all dealing with the various aspects of caretaking spouses, SOs who some are tototally broken , zome find a new life and some each other.  Some become murders, for drama, add comedy and walla, a movie.

would it work, or woul it be to close to reality?

We Arree not. bad people, just got deelt a bad hand.


rodstar43
Posted: Thursday, February 22, 2018 10:47 PM
Joined: 8/29/2016
Posts: 49


Thanks Blonde, you know what jumped into my my mind as I read your post?

A title for a documentary movie "THE CARETAKERS"would have 5 or 6 stars all dealing with the various aspects of caretaking spouses, SOs who some are tototally broken , zome find a new life and some each other.  Some become murders, for drama, add comedy and walla, a movie.  With all the baby boomers we could have a hit on our hands.

would it work, or woul it be to close to reality?

We Are not bad people, we just got delt a bad hand.

I am ready now. not next year, now!!!

 


rodstar43
Posted: Thursday, February 22, 2018 10:57 PM
Joined: 8/29/2016
Posts: 49


Hi Lillabet, first, do not wavier, you are doing the right thing.
I have a Vet friend here at this ALF that has a new roommate that is a mean man. Sounds like FTD. Did they give your hb meds for AD  or what. It sounds. bad even man on man. My vet friend has serious COPD and has complained to management. The sooner the placement the better.

McCott
Posted: Friday, February 23, 2018 11:46 PM
Joined: 8/22/2017
Posts: 531


MrToad wrote:

McCott:

In one sense perhaps it does not make it any easier to know that all around you, perhaps on the next block, likely in your town, certainly in your area, and definitely all around the country there are other ordinary souls like you and me and the others on this forum who are going through variations of the same nightmare you are going through. 

 

Thank you MrToad -- I do appreciate being able to vent.  I know my post was heavy duty and close to objectionable but I am glad that people understood me.  It means a lot.  I am hanging in and will carry on because I love the person he used to be and I still care about what is left of him.  I would never walk out, but I dread what lies ahead.  You all do understand, I know.



McCott
Posted: Saturday, February 24, 2018 12:40 AM
Joined: 8/22/2017
Posts: 531


chihuahualady wrote:
All the above thoughts are mine, too. I often wonder why the nursing homes do such a good job administering the BP meds and the heart meds , and every year the flu and pneumonia vaccines. I mean, have not the folks reached a point when nature should be allowed to let them go naturally? 

 

Thank you so much for this -- while still competent, my husband refused the new Prevnar (or whatever it's called) pneumonia vaccine, but his PCP with electronic records did not record that and has it marked as Overdue.  He is also a Type 2 diabetic and I give him a huge number of pills every day to keep his blood sugar under control.  I would like to discuss discontinuing these pills with his doctor, but I am terrified of being seen as planning his death.  I don't know what a type 2 diabetic end point might be, but why cannot we not even ask about something like this?
As for why the nursing homes keep up the medications and flu shots, someone has to mention that this is a huge growth industry and people are making money from keeping ALZ and other dementia patients alive.  Why is this not questioned?  Why are we like sheep?  I can tell you that I am afraid of his doctor and all doctors.  My PCP retired and I went looking for a new one, telling about my husband.  When this nice young doctor told me how great her 95 year old grandmother was doing with ALZ, I moved on quickly.  I couldn't believe getting this ALZ is fine! lecture from a 30 year old.  I could hardly wait to get out of there.

Hischild77
Posted: Saturday, February 24, 2018 1:14 AM
Joined: 9/16/2017
Posts: 112


I sincerely hope this thread doesn't get deleted. I'd started a post and apparently took too long writing it and an error showed and it wasn't submitted. I'm glad because it was a long long long rant.

Someone referenced being a slave. My DH can't remember anything, never could, but I've been cursed my whole life with not being able to forget anything. Hyperthymesia is a CURSE. The first week of our marriage he said "I won't put you to slave labor right away." and chuckled. Was that a foreshadowing of my life with him? I feel it was as he has shown no responsibility whatsoever for anything. He does Facebook and that's it, besides eating, drinking coffee, and sleeping.

I've wondered if he has FTD since reading what Kellly has said about her ex led me to read up on it. My DH is a ONE word description: SELFISH. If something doesn't pertain to him directly it is NOT a thought.

An appt has been made. His symptoms will either be confirmed and help given, or not. For now, know that you aren't alone in your thoughts. I make faces after tuning away from him, say things out of hearing, and wonder (devilishly) if the sleep apnea will do him in. He refused to use the machine after a sleep apnea study by the VA He said I took the hose out of the bag so it's useless. Nope, the hose is right there. He doesn't take ANY suggestions from anyone, docs, nor from me.

I could go on & on but digress. Thank you for saying what I'm feeling.


rodstar43
Posted: Saturday, February 24, 2018 7:56 AM
Joined: 8/29/2016
Posts: 49


Blonde, you said it, waht we have become. and adre becomin. i want myelf back.
Gig Harbor
Posted: Saturday, February 24, 2018 9:07 AM
Joined: 3/10/2016
Posts: 1016


Chihuahua lady, as a healthcare provider I can tell you that many providers feel the same as you do. We hate to see patients come in to the ED who are end stage AD, stroke,  COPD or simply failure to thrive old age. They arrive with POLST forms that state no CPR but do allow for antibiotics and fluids. If they have pneumonia the hospitals are under a time limit to get antibiotics started or Medicare can reduce the payment to the hospital. The antibiotics are very hard on veins and often a central line must be put in the patients chest wall. Next a Foley catheter is inserted to help manage fluid volumes and prevent congestive heart failure. Lastly because these lines and tubes are irritating the patient often has his/her hands restrained to prevent the tubes from being pulled out. What started out as simple sounding antibiotic treatment turns into extensive painful treatment. Family members need to be ready to say NO to all treatment when they arrive at the ED or it can turn into the above scenario. It can be a really difficult decision to make in a couple of minutes so you need to be absolutely sure of your choices ahead of time. It is possible to keep someone comfortable and allow them to pass without giving IV fluids and antibiotics.
mrsbob
Posted: Saturday, February 24, 2018 2:21 PM
Joined: 2/9/2017
Posts: 21


Wow, I usually only lurk but today this caught my eye and after leaving the computer for about an hour I was drawn back.I too feel trapped, resentful and want out. So I thank all of you.

We are going in to year six of this journey and the last year has gotten worse almost daily.  I am so angry and then I feel so guilty. I have been so afraid to say anything because I feel like a horrible person. Like someone else said I secretly wish for him to have a heart attack or something like that, then I have to ask God to forgive me because I feel like I am betraying the love of my life. My DH is 82 + and physically he is very healthy.  When the doc says "oh he is going to outlive us all" my stomach ties up in a knot because I know  she probably is right.  We have been married almost 41 years and the first 35 were wonderful.  NOT perfect by a long shot but really, really good.  Now he is angry most of the time and his mouth can get really nasty. He is in diapers, sleeps 20 hours a day (thanks to whoever said the same) wears the same clothes for days even tho every day I lay out clean clothes for him.  He just puts them in the dirty clothes.

I am so lonely!!!!  We have no family close by and our friends are either dead or have backed away from us because I am sure they are scared and don't want to "catch it."  I need so bad to be just held or talked to.  BUT he smells urine all the time, his nose runs constantly and His hands sometimes have some BM on then.  So closeness is not a consideration.  I would love to go to the movies, a nice restaurant, a play or anything else.  Not possible because I would have to take him and that wouldn't be pretty. I would love to have a normal conversation with him, or anyone for that matter.  When I see my therapist once a month I'm sure I talk his ear off.  I really should put him in  AL but we have to pay the first three months ( we have LTC for after that) but we can't afford that, not with the price of his meds, and those have just gone up.

Well I have rambled on long enough, SORRY.

Sure hope they won't stop this thread because we are not mean folks, just tired and lonely.

There is no adult day care close, the closes is about an hours drive from here, so it is just me.

 


Gig Harbor
Posted: Saturday, February 24, 2018 2:45 PM
Joined: 3/10/2016
Posts: 1016


Hi Mrsbob,

Just a question - if you stopped his meds could you afford to place him in AL? It sounds like you need to really give time and attention to yourself. You have given him a lot of time and love but if you don't take care of yourself what would happen to him? He would get placed so it would be the same ending. Please don't short change the importance of YOUR life. He sounds like he is at a time in his life that the meds won't make him better and may only be prolonging his life. He is not going to recover and will continue to spiral down. Don't ever feel guilty for wanting to have some quality of life and some enjoyment. 


 
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