This May Sound Terrible, But....

The4thOne

As I have posted previously, we just placed Mom in a NH.  We should have started when the doctors told us nearly 2 years ago; we didn't, we tried 'love-management'.  It doesn't work.  So many lessons, one being, follow the science.  If you trust their doctor, and the doctor says start looking into facilities, start the look and the conversation.  Like it or not, at least there is time to include them in the process, and get them in the mindset. They won't like it, and won't be cooperative, but you can start to make the case 'your doctor suggest we talk about it', for their good.  The arguments you will have when their mind is still somewhat reasonable are far more possible than when you are trying to explain it through your frustration to a mind whose logic is gone.  Nothing good will come from that.  Many doctors will back you and let you blame them; they know how to be the fall gal/guy in these decisions.  But start looking on your own, drive by the places with them in the car, but start little steps when the doctor suggests or informs that AL, MC, LTC is on the horizon.  

Reading others tips, I practice the distancing.  This may sound terrible, but I am actually glad that I live in another state, and no longer on schedule for the dreaded obligation, 'ugh, it's my month!'  My brother, her PC can visit her regularly, which is a breath to him since she is not in the home. But is it terrible that my relief from the caregiver role, has been swift - and good? I have dealt with some emotions, but nowhere near what I expected.  I just feel relief and not much guilt.  She's settled and taken care of.  When I speak to her, she is mad, sad, sometimes jokey, and asking when she is going home.  Am I terrible to feel like in those moments, 'just listen for a time but she's there now, she'll get used to it; that's their job now.'  Is it terrible to feel like, 'well, now you don't have to go to NJ until you want to.'  Is it terrible to not plan a trip to go anytime soon, and not feel bad about that?  Is it terrible that I was able to go through her stuff, not throwing it out, but just dispatching who, what and where without a lot of 'awww' moments,  but just doing what needed to be done?  I know this sounds like I feel guilty, but is it terrible that I don't?

I know this is rambling, but hear me when I say, I love my mother tremendously, my heart broke many times, cried many tears as she has been the absolute, best mom I could imagine, and one of my best friends. When we could no longer ignore the depth of her issue, I decided to mourn my mother then; this person now is NOT my mother, but I am still a daughter and her Warrior Advocate.  In this forum, we pour out to each other, to those who get it.  Hope I'm here for someone else.

PickledCondiment

At the risk of sounding hard and difficult, sooner or later you need to take care of you. You've obviously done all you can for your LO. I've found if you don't distance yourself from the situation, you will into the mental abyss. 

If you don't make the hard decisions, the situation will only deteriorate. 

syrac818

I don't think that's terrible at all. 

Would your mother want that life for you? Would your mother want to be a source of pain and anxiety?

What's terrible is that we're all placed in a position forced to watch a loved one die in a slow and cruel manner.  We literally have people discussing starving their loved one to death,  and those people are the most brave,  loving people on this forum. 

Until we can discuss the obvious - euthanasia - we're all just discussing how much pain our loved ones can endure .  And ourselves as well.  

So no... you're not terrible.  And don't let yourself feel guilty for wanting a moment of happiness.  That's what your mom would want. 

MonicaG

You’re not terrible at all. You sound relieved. My mom (78) has ALZ stage 4 and scored 10 out of 30 on cognitive. My sister and I had the conversation of the doctor said you shouldn’t live alone. Well, you can only imagine how that went. My mom got other family members involved and me and my sister were maligned for even bringing up the idea. We’re terrible daughters. We just want to throw her in a home. I thought the same as you, get her used to the idea, be part of the conversation. No way was she going in a “home”. We just have to pretend everything is fine and dandy. So now we just have to continue living like it’s 1979. She’s at the bar tonight. Am I picking her up?  Not sure yet. Maybe she’ll spend the night over at the guys house she was at last week. Sounds dangerous, right? We’ll just have to see how this plays out I guess. My nightmare continues. Your situation is somewhat more stable and safe. I’m glad for you. Concentrate on yourself. Maybe one day other family members will realize we should have listened to the doctors. Sorry if this was rambling.

Lindsay22

I just wanted to tell you that I have said the same thing, this is NOT my mother.  I am charged with caring for a person who lives but has no quality of life but I am not caring for my mother.  My mother has been gone for about 2 years and now I have a terrible, painful, expensive, cruel project to work on for some undetermined amount of time.  I am working to release the guilt, which for me is a bit different.  I feel guilty because I don't want to care for her, I want her to pass so that neither one of us has to suffer anymore. 

So I hear you, and you aren't alone. 

SDSmith

If I have learned anything from reading posts on this site, it’s the fact that I’m not alone and please know that YOU are NOT alone.  There is comfort knowing that others here have felt the same as you.  This disease takes us (caregivers) on a roller coaster ride.  There are good days and bad days and it takes so much strength to get through the bad days.  My mom has been in a home for 8 weeks now and I’m so glad my father finally listened to the doctors and to me after a yearlong “begging” on my part.  They live one tenth of a mile from a major highway and I was always scared she would wander off and try to walk along the highway.  In the last six months before putting her in a home, she did so many things that weren’t normal.  She threatened to kill him many times, hallucinated and threw many, many manic fits.  Putting her in a home was the best decision he ever made.  He literally slept all day for a full week after leaving her at the home and he is flourishing.  She is in stage 7 now and there is no way he could handle her at this point.  She doesn’t talk only mumbles, chews but can’t swallow, screams, cries, picks up chairs and throws them at the staff and is just completely manic.  She even kicked out a screen and jumped out of a window, jumped the fence and ran from the staff.  She is now on heavy medication and they are talking about sedating her.  So no, you’re not a terrible person for feeling the way you do.  One thing I have learned is that we, the caregivers, need to take care of ourselves too, mentally and physically.  Your loved one is now with professionals that know how to deal with Alzheimer’s.  Visiting her will be easier knowing help from the staff is at your fingertips.  Just the other day I visited mom and when she saw me she yelled, “Oh my God you came!”  I rolled her wheelchair up to my knees and she put her head in my chest and sobbed.  So I know she’s in there and I love my mom but I also mourn her and often feel guilty for asking God to just take her...  Hang in there, you are doing great!

Ginsamae

You are NOT a horrible person. I care for my MIL and it has definitely taken a toll on me and my relationships with DH and my children. It has also severely strained my relationship with DH's siblings and his extended family. I want out. Fortunately, DH heard my pleas and has arranged for MIL to move to Sib #1s house next month. She will be there for the foreseeable future, but they have already made it known that they don't want to be "stuck" with her (but they were willing to allow us to be so!). I've been told by them that they are "dreading" having her come.

I believe MIL is at stage 4 but is showing some signs of stage 5 behaviors - she's not showering as frequently and when she does it's for a very short period (maybe 2 minutes). She is hallucinating - talking to someone that isn't there - and mixing up/combining stories. She is telling outright lies about me & my youngest (though I know she believes these stories are real) and is also developing more paranoid and anxious behaviors. She is convinced that she has a doctor appointment today - she doesn't as hers was 2 weeks ago, but DH does have one today for himself. I've got 3 weeks to go and I hope I can make it.

You are not alone and you are not terrible. You are human and all of us here can understand your thoughts and feelings as we share them, too.

Hugs

IFloyd

I don't feel so bad thinking that I am not the only thinking some of the thoughts posted here.   I have thought about a nursing home but feel guilty for that.  My mother right now refuses to get out of bed as her legs hurt. They did X-rays and didn't find anything.  She gets combative with me and the aide when we try to change her or clean her up.  Not eating much, stares into space and doesn't really talk.  I am thinking the end is close but hate to think that but also wish that too.  That is where the guilt comes in!

rzrbaxfan

I can relate to that guilt, IFloyd.  I get that guilt too.  I know there will be a sense of relief when the time comes. Is that wrong?

Earlier this year, we lost a dear family member to Covid.  When they said "does anyone want to speak?" at the service, I stood up and delivered a eulogy that is still being talked about today.  I thought through it the night before.  It told the story of her life, made people laugh, made people cry, and gave their young adult kids a lot of encouragement moving forward in life.

Since then, I've thought about the fact that my mom isn't connected to church anymore, and at her service, no pastor is going to know her well enough to deliver anything that will bring honor to her life.

I have written a eulogy, complete with an invitation, that I am prepared to give.  I have prepared pictures for a slideshow and selected music.  AND I FEEL GUILTY FOR DOING THIS!  The realist in me says "it's inevitable, it's ok to prepare", but the soft heart in me says "dude, don't dig the hole just yet, enjoy her while you can".  Rips me up sometimes.

Stuck in the middle

No guilt allowed!  You are planning a funeral, not an execution.  None of this is your fault.  You didn't cause this and you can't fix it.  You are doing your best in a bad situation.

The4thOne

Thank You all so much for your affirmations.  For all of us who congregate here, there are many things that we comfort each other on.  I would like to share some of the insight I've decided to embrace.  In order to normalize (if that is possible) I embrace that GUILT is part of the process in adjusting to this role.  There has to be guilt, because of all of the dynamics that we are adjusting to, it would be abnormal if there is no guilt.  The relief that I am starting to experience is because that part of this journey, was part of the mourning process, I think I was able to normalize the guilt - it was so much a part of what made the decision to move her to her next level of care in a facility, the last thing we wanted to do.  Because guilt stopped us.  But I also decided that Guilt is a very arrogant emotion.  Why?  Because Guilt assumes that you have some control and could have done more.  You no longer have control, there is nothing you nor a doctor, can do to reverse or change the course of this disease, and make it better.  To believe that you can do more is a very arrogant thing.  As caregivers we know, loss of control for them, for you, for everything has been removed from their earthly beings.  As a woman of faith, only God is in control, so I choose to humble myself in the name of His plan for this to happen and let Guilt remind me that I have no control.  Turn guilt into a motivator.  You can only do what you are ABLE to do.  No more.  And guilt won't change that, only frustrate you in your inability, cause you to be unwilling, which is the root of disobedience, and that also works against what God is allowing. That will drain your energy, sap your spirit and let negativity, despair, and depression overwhelm you.  And you need the energy you have to do ONLY what you are equipped.  I know this sounds preachy, but there has to be some reconciliation in your soul that will help counteract guilt.  Because guilt is coming, and plans on staying.  Don't let it take up residence in your spirit.

aod326

Rzrbacks fan. Your two statements aren't mutually exclusive! "It's inevitable, and it's OK to prepare; but the hole doesn't need to be dug yet and I'll enjoy her while she's here." Both statements are logical and heartfelt.

I found that having everything prepared for when DH died was actually really helpful for me. I just had to press "go" on the plans when the moment came. I'd discussed everything with the funeral home, knew who to call about the brain autopsy, had a list of friends and family to call - divided into Tier A and Tier B. I knew the deadline for getting the obit in the paper, for his older relatives who still check an actual newspaper. I'd decided the timing of the service and wake. For the eulogy I had the outline in place, but left the actual words until the night before.  The one thing I had totally blanked on was what to wear! So a mall trip and online orders ensued.

For me, I don't have any feelings of guilt. I know I did the absolute best I could, with whatever information I had at the time. I could not have been a stronger advocate for him. I do, however, have feelings of regret, mainly that I wish I hadn't needed to do any of those things, including placing him. But it's not guilt.

I stood outside the window of his MC room (because of COVID) every single day but one, chattering away, trying to engage him even though he hadn't communicated for months. I brought him home for his last three months, taking leave from work and bringing in a live-in carer. I miss him terribly, all the time, but adding guilt to the crappy hand we were dealt is not going to help! It's also not going to change the trajectory of the disease. 

I sound very bossy - sorry!

M1

rzrbaxfan, I wrote a eulogy for my partner when I first realized I was really losing her.  I even gave it to her to read, because it mainly focussed on what an amazing person she was and how much I loved her---but she doesn't remember it now.  I don't think that's necessarily morbid at all.  It surely helped me to write it, which I think was the point anyway.  It gave me the chance to say everything I wanted to say.