Perspectives

Jeff86

Recently,my DW’s best friend—I’ll call her Rose—came from the left coast for a week’s visit.  Rose and DW have been close friends since they were 12; she was my DW’s first friend when DW came to the US.  Because of Covid, Rose hadn’t seen DW in almost 2 years.

Over the many years, Rose and I have also become good friends.  She is one of the brightest people I’ve ever known.  Also one of the most opinionated.

It was great to have adult conversation in the evenings, and I was glad for her visit, for her company.  And grateful.  And, much as I grieve, daily, for my DW, I know that Rose has also lost her best friend.

Rose certainly noted the disease progression since she last saw DW.  She used the analogy of a flickering candle.  Sometimes the light is clear and strong, sometimes it is sputtering, on the brink of being extinguished.  So it is with DW:  sometimes with the program, sometimes very out of it.

But she also said two things that stopped me in my tracks.  

The first was to ask me why I haven’t placed DW.  I noted how relatively easy DW is to care for, the wonderful aides I have to help with caregiving, and most particularly how my DW clearly wants to be with me, at home.  Rose wasn’t having it.  She said she and DW had discussed issues like this well before AD and DW would never want me to be caregiving for her for years on end.  (DW is late stage 6.  We are in year 5 of this journey.). While I acknowledged that DW as she was would absolutely hate seeing what she has become, she now wants to be cared for at home.  Rose argued that I should be guided by the DW who was well and wouldn’t want this, and not the DW who now has a broken brain.

I’m not ready to place my DW but it was an interesting argument Rose advanced.  What should guide us caregivers?  What our PWD wanted when he/she was well, or what he/she wants now?

The second thing Rose said is, “I want [DW] to die.”  That really caught me off guard.  I think I know why she said it.  DW as she was is gone.  The woman who has taken her place has no life of the mind.  Has no awareness of her surroundings.  Doesn’t know the day, the season, the town we live in, the name of the president.  She takes small shuffling steps, tires easily, and sleeps a lot.  By the standards of who she had been, and what she valued, it’s not much of a life.

I can’t say that I want DW to die.  But in some ways, I don’t really want her to live longer, either.  I don’t want her to suffer the ravages of stage 7–the loss of affect, swallowing challenges, immobility, on and on.  And, tbh, I don’t want to bear witness to all that.  Not that there’s a choice in any of this.

Not really looking for advice—just thought some of you might also find Rose’s perspective thought-provoking.

littleme

Hi Jeff
My DH is just coming up to 5 years in residential care, now either very late stage 6 or beginning of stage 7.

Like you, I don't want him to die, but I definitely don't want this existence to continue, with no quality of life for him. His candle does flicker now and then, but not enough.

I hate this disease.

littleme

JJAz

Sometimes we continue to take care of them because we couldn't live with ourselves if we didn't.

Jeff86

JJAz wrote:

Sometimes we continue to take care of them because we couldn't live with ourselves if we didn't.

Excellent point.  I’d like myself less well if I didn’t do the most I can to make DW’s life as good as it can be.  

Ed1937

JJAz wrote:

Sometimes we continue to take care of them because we couldn't live with ourselves if we didn't.

I fully agree with that. But thinking like that could be dangerous for the caregiver if it goes on too long.

LadyTexan

Jeff,

Thank you for sharing these thought provoking issues.

The other day, DH and I had a very nice day. Two of DH's dear friends called. When we went to bed he told me how happy he was to talk to two dear friends. He was relaxed and fell asleep.

When I prayed that night, I mentioned that would be okay if God took him that night. My hope is that DH leaves this world after a good day when he has happiness in his heart. If my husband does not suffer another day with Alzheimer's disease, DH and I are both okay with it. I do not wish DH longevity. 

DH is still here. Yesterday was a frustrating day for us both. I want my husband to have a good life, not a long life.

DrinaJGB

For what it's worth--and feel free to disregard this completely.

 So this "friend" is shoving her opinions about your DW after not having seen her for years; telling you what you should do because your DW wanted it? I see this as arrogant, self-serving, and an attempt to judge you as the care giver to your beloved wife.

I have been judged for years by a few well-meaning folks who pretend to be saying these cruel things regarding my own life and the life of my DH. In no way does someone have a clear perspective as to what you are dealing with, or what your feelings are. She saunters into your life and intrusively thinks she can tell you how to live it, and what's good for the both of you. with her so--called good intentions.

If this was a "friend" of ours I suppose I would promptly ask her to leave and not come back with anymore of her judgements that she has vocalized just to make herself feel better. Perhaps she is intelligent---but she is also clueless as well as heartless.

  Did her "opinions" make you feel better or worse?

 Just saying.

The road to Hell is paved with good intentions--and not so good ones as well.

Quilting brings calm

==  Rose wasn’t having it.  She said she and DW had discussed issues like this well before AD and DW would never want me to be caregiving for her for years on end.  (DW is late stage 6.  We are in year 5 of this journey.). While I acknowledged that DW as she was would absolutely hate seeing what she has become, she now wants to be cared for at home.  Rose argued that I should be guided by the DW who was well and wouldn’t want this, and not the DW who now has a broken brain.==

It is an interesting perspective.  Especially when you add in all the decisions you make on your own for the protection of your wife because she is no longer able to make good decisions. Such as driving, banking, cooking, etc.  Yet you feel your wife is competent enough to choose her overall care.  

As others said, this is about how you would emotionally feel about yourself if you placed her.  Since Rose is not coming from that same perspective( guilt about placing her), she can see more neutrally than you.  She can also see you from that same neutral place.  She can see more clearly than you what caregiving is doing to you.  When someone’s very good friend gives you this particular advice about their friend, it’s a great gift - trust.   She is telling you that she trusts you if you decide to place your wife. She’s also in a unique position to tell you what your wife wanted when her brain did allow her to make good choices.  

However, I am not you.  You do indeed have to make decisions for what is best for both of you.  Someone like me sitting at the other end of the phone having never met you or your wife, and who’s loved one isn’t as far along as your wife shouldn’t tell you what to do. So do not think I’m telling you what to do other than suggesting you let Rose’s perspective sit in your brain for a while. 

LT-  I also think quality of life is just as important as quantity of life.  Especially in cases where the quality of life is so limited and so poor  and isn’t going to improve.   Late stage dementia( and other diseases too) robs a person of everything that makes them who they are. They are left with a shell surrounding emptiness. I think it’s so much different than purely physical limitations because their brain is gone too.  

loveskitties

Jeff, I think the most important part of your post is your question....what should guide us caregivers.

My answer is our head, our heart and our pocketbook.  These three things determine what we should do, want to do and can afford to do, to provide the best care possible for our LO.

There is no question on the advanced directives that we fill out regarding how we want to spend our remaining days if we develop dementia.  So we go with what we feel is best for our LO at any given moment.

Your DW may have expressed those sentiments to Rose, and if she did it was with the love she has for you and not wanting to be a burden to you.  From what you have written, while her care may be challenging, you do not see it as a burden but as an extension of your love for her.

I am certain if the time came when you felt that a care facility could provide better care and safety for your DW than you can at home, you would make that decision.  Until then, you are doing what needs to be done.

Wishing that our LO does not suffer, or linger in a near vegetative state is far different than wishing them to die.  That is why some of us may have to make the difficult decision to not do life saving treatments for other medical issues.

Rose has her opinions as everyone has a right to one.  That does not make her right and you wrong for the choices you make.  

As long as you can look in the mirror and know that the person you see is doing what is best for you and your LO is all that matters.

Doityourselfer

What's guiding me as a caregiver to keep my husband at home is my ability to take care of him at the stage he is currently at.  Although he is in the severe stage of AD, he is still able to get out of bed and slowly walk from the bedroom to the shower to the kitchen to the family room.  He is still able to feed himself most of the time.  When he gets highly agitated, that is very difficult to deal with but it passes.  

When someone asks me when I'm going to place him, I just say I'll know when it's time.  Those who are not in our shoes just don't know.

I hope is that my husband has a peaceful passing, and I hope it's sooner rather than later.

Stuck in the middle

This is thought-provoking.  

I placed my mother and my son.  In both cases, they were better off with professional care and the decision was easy.  My wife can't live independently but doesn't require constant supervision, so the decision to keep her at home isn't even an issue.  But what if the PWD is as well off one place or the other?  

Some posters report their LOs no longer know them, and consider them servants or a "benign presence."  In that case, do you struggle on until it breaks you, when your sacrifice is of no benefit to the PWD?  If so, why?  Why feel guilt when you are seeing to it that your LO is cared for, even though you are not personally providing it?  Do you personally do her dentistry as well?

The OP says in his profile that he is no longer able to do such simple things as garden and run with his dog, due to the time constraints of full time work and caregiving.  His friend "Rose" thinks this is a bad thing, and I am not sure she is wrong.  

fayth

I am caring for my DH at home.  He has EOAD and is now stage 7d on the FAST scale. We have been helped by hospice for the last year.  DH has been in a hospital bed, in our living room, all of this time.  He is totally non-ambulatory and I must everything for him.  I have some in-home caregivers to provide me some respite, but I'm the primary caregiver.  Each day I wonder how long I can do this.  But for me this stage is easier and more peaceful than most of stage 6 was.  He sleeps much of the day, and through the night.   He has some bouts of agitation, but they pass.  Although he cannot speak, he murmurs.  And he has the most wonderful smile.  I know his healthy self would not ask me to do this.  I think that his needs could be met away from home now because he is much less sensitive to where he is and who is caring for him than he was even a year ago.  But I keep him home because I love him and because I like having him here.  I won't be able to 'move on' with my life while he's still alive, regardless of whether he's at home or in a facility.  Also, I'd rather spend time with him here at home, than having to go to a facility to be with him.   I never expected that this stage would last as long as it has, and I might not be able to do it until the end.   So I take it a day at a time.  I've been reading this message board for several months, and this is my first time coming forward.  Thanks to all of you for sharing so much.  It has been really helpful.

terei

My best friend knows my mind much better than my husband does.   Rose has been close to your wife since they were children.   I would listen to her opinion about what your wife would have wanted.     It is YOUR decision how to handle your wife’s care, but Rose’s opinion is certainly worth considering.

It was never even considered that my mother be cared for in a relative’s home.   We all have full + demanding lives already + knew my mother’s wishes on the subject.   She would NEVER have wanted one of us to upend our lives by having a PWD in our home.  I feel the same way.  If I am the PWD, I would be extremely upset if my DD were to try to take me into her home.  

Fortunately, my family has the resources to pay for placement.   My mom went from Independent living to AL and then to MC with constant contact + attention from our family, but in home care was never on the table.

Each family must make their own decisions about these matters.  

LadyTexan

My perspectives and DH's perspectives have changed for us both over time. 

Before the diagnosis, when DH was having the 6 hour neuro-psych testing, he told the psychologist that he didn't want me to have to care for him if he were "in a wheelchair or wearing diapers". I understand DH's sentiment. At the time, neither one of us understood the financial resources needed for his care. Or the types of facilities available to provide his care or even what the dementia journey would be like for us.

Over the years, my parents have frequently stated that they do NOT want to be a burden on us children. Again, I appreciate their sentiment. I don't believe they contemplated what the various types of care and assistance they would need over the years. Assistance with bill paying and filling the med box and providing guidance regarding technology are things that I used to be able to do for them. As my responsibilities to my husband increased, my availability to assist my parents decreased. They are resistant to hire help.

I think it is likely human nature to not want to be dependent on someone else for care. I certainly don't want to be dependent on anyone else. But it will likely be in my future. 

Providing care may (or may not) be a burden, it may be an act of love, it may be a vocation, it may be the best choice of choices that all seem horrible.

I think it is up to each individual caregiver to make the decision that is in the best interest of the loved one and themselves based on their situation. Its a difficult decision. It is interesting that it seems so easy for others to chime in when it comes to what is best for caregivers and their loved ones.

Joe C.

Jeff86 wrote:

What should guide us caregivers?  

When it comes to MC places I have always believed that I had standards that would guide me to make the decision when the time comes but I often feel I “can not see the forest for the trees”. 

I have been committed to providing DW the best life possible but I struggle with whether keeping DW at home is really the best life possible. For years I was able to keep DW socially active which she 

Joe C.

  

Jeff86 wrote:

What should guide us caregivers?  

When it comes to MC places I have always believed that I had standards that would guide me to make the decision when the time came but now I often feel I “can not see the forest for the trees”. 

I want to provide DW the best life possible but what does that life look like form her perspective? I want to keep her at home as long as I am providing the best care possible, but when do I know that others could provide better care? Over the early years of this journey I was able to keep DW socially active but Covid put a crimp in our social activities. Could MC provide socialization that I am no longer able to provide?

I wish there was a guide to navigate these decisions because these days I am just feeling my way in the dark.

Hope Still Exists

Praise God for this discussion.  I thought I was alone!  I am new to this site, and am so grateful for this discourse.  I felt guilty.  I no longer do.

Cathy123

Hi there Jeff86. I make decisions on whether or not I feel regret. If I feel I can live with my decision, then so be it. 

I tend to steer away from opinionated conversations nowadays. If they dare walk in my shoes, they might apt to feel like punching opinionated people smack in the nose! 

In the early onset, I was in need of an open mind therefore open to trying what others do. Now we are in the later stages and the way I see fit is dependent on me living without regret. 

The time will come with end of days. Whether that be with hospice at home or out, that will be my decision.  

Now if a bestie came forward and thought I was not of sane mind, I'd go/do whatever they thought I should do BUT NOT BEFORE I PUNCHED THEM SQUARLEY IN THE NOSE and blame it on 2nd hand alzheimers (kinda kidding)

You continue to post and share and hang in there 'til you can't .

Jeff86

I really appreciate the really thoughtful responses to this post.  All the best of this forum can be found in your responses—the personal experiences, the generous sharing, the heartfelt concern.

 First, as to ‘Rose,’ I was not offended by her observations, I did not feel she was interfering,  and I did not feel judged by her.  She is a dear friend to both DW and me, and I believe she was profoundly saddened about how her best friend has progressed and was concerned on my behalf that there could be years more caregiving ahead.  When she was in her early twenties, Rose cared for her mother as her mother was dying of cancer, and not that many years later spent a few years caring for a (non-loving) husband who was receiving the earliest experimental chemo and radiation therapies for non-Hodgkin lymphoma.

I also know, without a shadow of doubt, that my DW, who is older than I am, dreaded the thought of being a burden to me, and I am sure she and Rose would have discussed this.

But this post isn’t really about Rose, but rather the issues she raised, that are applicable to most all of us as caregivers.  How to decide what care our PWD needs and who will provide it?  What are the ‘rights’ or claims of the PWD?  Where’s the balance between the PWD’s needs today and the caregiver’s needs both today and in the hoped-for future?

PWD’s can still express preferences.  This very day, my DW—out of the blue—said, “I’m so glad I can stay with you please.”  But they don’t have judgment about what’s best for them, and they lose empathy to understand that there’s a cost to the caregiver.  My DW is not competent to order lunch from a menu, never mind to know what care she needs and where it’s best provided.  And am I best suited to provide that care?  I love the line from a post:  Do you personally do her dentistry?  (Of course not:  just brushing teeth is an ordeal!)  Maybe, just maybe, the activities and socialization in a MCF would make for a better life than care at home, loving and individualized but a smaller circle of engagement.  And, like others, I want a good life for my DW, not a long one—although even there it’s hard to say what a good life looks like for late stage AD.

For me, caregiving is definitely an act of love, and in that sense I do it willingly, with an open heart.  I don’t think of it as a burden, even as it weighs on me.  For some caregivers, it may give purpose to life—even, for some earthly saints, be a vocation.  Me, I’m not that saintly.  Caregiving forces me to confront daily the grief I experience, and I find it hard.

I believe Rose was providing support for a placement decision, and asking me to consider it sooner rather than later.  And I believe that while we as caregivers know our LO’s wants and needs better than anyone else, we can be too close, too deeply involved, to see with perfect clarity how well we’re doing it and what the impact is on us.

Still, as you all have rightly noted, the decision is ultimately mine.  And, at least for now, I’m guided more by my heart than my head.  I know my DW, when she was ‘herself,’ would hate the idea of years of caregiving for me.  But that compassionate and brilliant woman is gone, and the DW I have now wants me to care for her, at home.  That is, when she recognizes me.  (Big asterisk, that.  There are moments, and they’re coming more frequently, when she doesn’t.  That could be a game-changer.)  

So Plan A is to soldier on, for the time being.  I can, and so I will.  This is what devotion is.  But I don’t consider Plan A to be an irrevocable decision.

RanchersWife

I have several “Roses” who speak to me boldly about my caregiving and parenting. They devastate me by not understanding the situation and voicing opinions that are judgements.

RobertsBrown

I  would go easy on people for not 'getting it'.

This is no easy thing to understand, even if they are trying real hard.  I surely never 'got it' until I had to live it.

EVERYDAY

From what you said, I heard 'Rose' is not just a best friend of your DW, they are also childhood friend knowing each other since they were 12.  Both were immigrant to USA and have been visiting each other often.  And you and Rose are also good friend.

Here is what my perspective, Jeff.  I think you have left out some details of the conversation before Rose said "Why haven't you placed her?"  I believe what Rose said was a reply to the conversation.  It is obviously at Stage 6 (reading from your profile), the caregiving responsibilities must have increased a lot. If in that case I don't feel it is a "provoking" to say "Why haven't you placed her?".  It is not like she said that the minutes she walked into the house. 

The same to "I want her to die".  Conversations are flowing from you said, she said, you said, she said...  Now, you can't just pull a piece of words out of the whole picture and judge that.

For someone who flew across the Country immediately after COVID opening to visit her childhood friend, I don't see ill-meaning in her words especially in a flowing conversation.

It is not fair what you did here .  You don't need to throw your wife's best friend under the bus. 

Pam BH

Jeff86, I think your reply yesterday was extremely thoughtful and caring.  Thank you for the reminder that I too need to take a minute every so often and examine if what and how I'm doing it is helping or hindering my DH and to take into consideration advice of my friends and family. Fortunately I have a daughter who is wise beyond her years and doesn't hesitate to speak up when she sees a concern that I'm too close to see. I can sense your love of your DW and the underlying care and friendship of Rose.