Having to be devious and feeling guilty

M1

My partner so much wants to still be functional and so isn't.  I'm finding I have to go behind her back to have conversations with multiple people just to keep things in the road, and while I know it's the right thing to do, it takes an emotional toll.

There are a lot of looming spring chores on the farm that she's normally in charge of, but she can't get herself or the equipment organized this year.  She doesn't have the stamina, and she can't even remember when she's called the mechanic or the guy who mows the fields; I'm having to text and call them after she has to repeat what's been discussed, or to discuss the real plan because she can't remember it.  I don't know how to do this without embarrassing her or hurting her feelings--and yet I don't want to tell her not to do it, that's been her life.  If I had my druthers, I'd sell now and downsize, but she loves this property, and I hope she can stay here til she dies.  

It's a real dilemma since she's so unaware of her own limitations.  Most of the folks she calls realize there's a problem and are grateful when I call or text to tell them the real story (she can't text or email any more, so at least I have a way to communicate in private).  And most have a lot of empathy--she's a charismatic individual, and most are willing to help, but I feel like I'm telling tales out of school.  Just got off the phone with one of the firefighters who normally helps us do controlled burns in the spring, and he said, "Now I understand, this makes much more sense."  So am having to get the fire department to tell her she can't safely burn, which will then give me an opportunity to see if we can hire somebody to do the heavier chores/field maintenance.  I feel like it's taking the whole small town to collude on this.  Life would be so much easier if she would just let me take over these things, but I don't see that happening.  She's so used to being in charge, and ran male crews professionally, so that's what she still wants to do.

Not looking for answers necessarily, though I'm very open to suggestions.  More of a vent.  Really slipping fast the last few weeks.  Indolent lymphoma has recurred in her lower jaw, too--and not sure whether we can or should do anything about it.

Ed1937

M1, I think you're handling it perfectly. I do a lot of talking behind my wife's back, mostly with family, but if a situation calls for it, that happens too. Sorry to hear she is having additional problems now.

Rescue mom

It is hard, but as Ed said, sounds like you’re doing well except for feeling guilty about it. Don’t (I know, easy for me to say), that ‘s just the way things are now. She has a disease, you have to cope with it, including trying to avoid upset.

DH used to handle household repairs, until he couldn’t. But there was a very short time when he might start, and maybe call someone for help. If that happened, I had to make sure I talked to them first, or very early, and told them the situation and to be sure they talked to me before proceeding, and about what was needed. 

I have no more issues about telling them Alzheimer’s than I would about any other illness. His comprehension problems were obvious and I’d rather tell people than have them speculate—which they will do.  The speculation rumors were worse than the reality.

I could tell them via cellphone or text, away from DH, or literally behind his back. I don’t see that as sneaky, it’s what had to be done to prevent bigger problems, including him being upset. Without fail, they understood and helped. Many had dealt with such before.

 It was a *very* short time between the point he could see a need and try to deal with it, and the time when he simply did not see or comprehend that anything needed to be done. 

M1

Thanks for the reassurance guys, I appreciate it.  Like I say, I know it's the right thing, but I do hate it.  But you are right, everyone has been very understanding.  And sometimes it just hurts more than others!!

karwiy

Venting is healthy. I'm sorry that you have so much on your plate here but your partner is lucky to have you.  Know that there are scores of us out here who understand and wish you strength as you navigate all of this. You are an inspiration to us all.

Ernie123

M1: I too felt uncomfortable and guilty a few years ago when fibs were needed to keep things on track as my DW’s condition progressed. After 53 years of marriage, total honesty every step, it was a hard lesson to learn. But as others have said it is the disease you are dealing with. Since you cannot rationally discuss anything, should never argue, usually a simple fib to redirect or distract is now what is best for your DW. I call it “lying for love”. The truth would often cause confusion or distress due to loss cognitive function. If fibbing is what helps keep her from distress, I try to find the best possible fib! The end justifies the means in this case since as caregivers anything we can do to reassure and calm our LO is what we should do. I think this is an example of cognitive dissonance when after a lifetime of trying to be honest we are in a situation where lying is what we should do and it just doesn’t feel right. But I have found as time has past I am used to it and no longer feel guilty. Dealing with this disease is life altering in so many ways.

Jeff86

M1, you are such a loving, kind, thoughtful caregiver—you have zero to feel guilty about.  The fact is that we are always have to take over functions our LO used to perform well and easily.  You’re just trying to limit how apparent the loss of capability is for your loved one.  Many important tasks have to happen, and it falls on you, now, to make sure they do happen.

The day likely will come when your partner doesn’t care any more or can’t even try.  That will be easier at one level—less need to hide or go around here—but at another level, another loss.

You are coping extraordinarily well under very trying circumstances.  We here all support you and know what you’re going through.

M1

Again I can't thank you enough for the kind words of support, I have tears in my eyes. I told my son about alzconnected.org yesterday and how important it is to me.  Lifeline and refuge, for sure. Hope I can return the favor, I really needed you today.

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Mint

M1 in the  canoe with you and understand.  I don’t like it either.

David J

M1 I know what it is like to have a professionally successful and competent partner with dementia. For 3-4 years after DW retired on disability, she still wanted to be in the game. It was very hard on her. At that point I was still trying to reason with her and expecting her to understand logic. That didn’t work so well. 

Skip forward a few years and I was texting and calling on her behalf, behind her back. It was hard to do and made me feel guilty. Skip forward to today, and I can talk on the phone, even a speaker phone, about her and her condition and even talked with a few MCFs and she didn’t understand.   

So don’t feel guilty at all. We all do what we have to do to keep our LOs happy and safe.  

Marta

M1:  it is often said here - you are not going behind your loved one's back, you HAVE her back.

LadyTexan

Dear M1. I agree that you are handling this perfectly.

I can definitely relate.  My DH is sometimes aware of his limitations and sometimes he is not. 

DH has no idea of how our financial condition has deteriorated. Expenditures for our home is an issue I have to keep a very close eye on. We invested the proceeds from the sale of our prior home into this home. Our budget is so tight, aesthetic projects are not viable. I have to carefully watch DH when he is interacting with the neighbors to ensure he is not hiring them to "do a little work". We have been here since August and most of the neighbors now know our situation so I think I have pruned that problem. Whenever we have a tradesman, such as a plumber or HVAC tech at the house, I am sure to inform the tradesman (out of DH's hearing) of DH's dementia. I inform them that I will make the final decisions on how to proceed.

One topic I am especially deceptive with DH about relates to his firearms. I'll say or do pretty much anything to prevent DH from accessing his firearms. He is obsessed with getting his hands on his firearms. Its a health and safety issue that I will not flex on. 

Its not easy embracing fiblets. I strongly believe fiblets are an important tool in the caregivers survival kit.

Thanks Marta for pointing out that we have our LOs back. It often does not feel that way.

Blessings to us all.

Cynbar

I'm struggling with this also and it is exhausting. A particular issue on our house is cost. My DH is locked in the past and has no concept of the true cost of anything. For instance, I am in the process of buying a new washing machine, and he is insisting that I not spend more than $150 (dream on!.) I'll have to head off the delivery men to say the machine costs no more than that $150, otherwise he'll be agitated the rest of the day (maybe longer.) Reminds me of that old saying, if you tell the truth you don't have to remember what you said. The problem is I had to throw that out the window. I know absolutely it's the kind thing to do, but I so miss the days we could discuss a purchase realistically and decide together.

M1

you guys are just awesome, all of you.  Helps to know I'm not alone in this--what a song and dance it is!  One of our good field guys came by this morning, and she sent him away telling him that she was going to do a burn:  little does she know that the fire dept. is going to refuse her a permit.  But she wouldn't let me talk to Eric privately, so I'm texting him as he's pulling out of the driveway to tell him to hold on, we are in fact going to need him.  Geez.  That was maybe three hours ago, and she's already asked me four times what his name was.

Yes, I'm sure some things will get easier as she declines further.  Darned if you do and darned if you don't.  Next up this afternoon is an email to her rheumatologist pending the first in-person visit in a year next week.  Catching him up on how bad things are.

Wish I could answer each of you individually but I can't tell you how much it means.....every single one.....

Marie58

Marta wrote:

M1:  it is often said here - you are not going behind your loved one's back, you HAVE her back.

Marta, I love this. Thanks!

White Crane

M1, yes, it does take an emotional toll.  And I've found myself feeling very guilty about all the little...and big lies I have to tell.  Others on this forum have reassured me that we all have to do it.  My pastor has told me that I need to do it and do not need to feel guilty about it.  It's still hard.  It sounds like you are doing a great job of taking care of things while leaving her self esteem intact.  As long as you can make sure everyone knows what is going on and cooperates, keep doing what you're doing.  She wants to have something to do.  I know this is wearing on you but you are doing what you need to do to take care of her...and of yourself.  I wish you peace.