Walking Gingerly
Oct 17 2012 in Elly's Granddaughter by EllysGdaughter
I had a heart-to-heart with my Awesome Hubby tonight and the outcome is a possible timeline for us to bow out of caregiving for Elly. I am really wondering how (or if) to have a reasonable conversation with Elly about her letting go of some of the responsibilities she feels she has. She is not functioning rationally which is born out by the laundry I came home to today. She is washing just one or two things at a time in the washing machine. This isn’t normal for her and I know that if I ask her about it she will rationalize her actions. Dementia, I assume Mrs. Early Stage Dementia is really to blame here.
I don’t want to wrestle the laundry and lunch preparations away from her because she still feels she needs purpose but she is not being realistic. According to my AH, I need to be more realistic in the care we give. Should I lovingly have a conversation with Elly, my grandmother, and Mrs. Early Stage Dementia to let them know that my caregiving will now step into her laundry, floor cleaning and our lunch meals as well?
She spent the afternoon nursing her “twisted back” from doing the ”four” loads of laundry, sweeping the porch, damp mopping the living room, changing her bed sheet and ?? The “twisted” or “cramping” back is coming up most days and for her to mention something personal bothering her is unusual especially more than one day out of the week. She still won’t ask for Help.
Awesome Hubby brought up his concerns about the tension and the argumentative conversations that I can sometimes have with Grandma. I don’t lash out at him or have a bad mood with him. We talked last night about how some of those arguments I let happen because I think she feels the need to argue and I will engage her without personal offense. He is understanding this now and because he wants to protect me, I need to reassure him that I am still okay.
I definitely need him to be there for me. We talked about how he is really “done” with caregiving for Grandma because she refuses to let him do the things she needs to have done and will not accept us as caregivers even after the talks we’ve had from the beginning onward.
Because we still have a home to move back to, I verbalized a timeline I’ve had in the back of my mind lately with Awesome Hubby. If Grandma continues to decline but refuses our caregiving judgement then she will need to be moved to a home by May; the house will be sold to pay for her care. If she can accept our help then we’ll be able to stay longer with her in a healthy way, but we are under no obligation to stay in this situation.
After 2 1/2 years, she hasn’t fully adjusted to the fact that we are living here to take care of her house and chores so that she can remain where she wants to be and is most comfortable. She may adjust now or deal with the adjustment to a “home.”
I see the realities and understand that Grandma’s personality issues may keep us from doing what we’ve envisioned. I already ask her if there are things I am missing that she sees that need to be taken care of and I’ll do them. Should I try addressing Grandma’s limitations with her to elicit permission and then if that doesn’t go well, just list the issues and how I will be doing the laundry, the floors, etc.? I have already taken over filling her pills without conversation, but she won’t engage me in her paying the bills yet. She originally said that she would listen to me when the time came for more care 
I am open to hearing opinions and advice.
kristin masters said on October 17, 2012
Hi EG,
You are a sensitive and sensible caregiver, and Elly is so lucky to have you with her. Everyone’s situation is different, and this period of tiptoeing vs. just taking charge is hard on all. You want her to maintain a sense of independence, but she isn’t capable of exercising it. With Mary, whom I took care of for over 3 years, we took a hard line on the car: Sorry, Mary, you just can’t drive anymore and we’re going to be your chauffeurs. With the checkbook, we waited too long. By the time the “financial” daughter took the checkbook away, $1000s had been spent on scams, ridiculous donations and silly catalog buys. This was one of the reasons the daughters could not afford to pay me.
Elly is not going to know when the “time comes.” Only you can know that, and step in when it is time. This is her last real independence, and it is hard to say, “Elly, I have to take this over.” I think this is one area where negotiation is not possible. Maybe others have had different experiences. Our rule was that if it was a safety issue, like driving, or a survival issue, like being able to save the savings, we just said, “This is it. we’re taking over.” For months after the daughter took the checkbook, Mary would say, “I want to get this, but D. has my checkbook.” And i would tell her D. would buy for her whatever it was. She was mollified and, of course, had forgotten all about it by the time d. came over.
With non-safety or survival things, like laundry, I just let Mary wash her clothes without soap or whatever, and then just washed them over later. Same with dishes. Cooking was a hard one, and took a while of working together then banishing her from the kitchen eventually. After a time, she didn’t want to cook anymore. Solved that.
Elly does sound a bit like Mary, and I can almost guarantee that negotiating with her about being her caregivers is not going to get her to accept it. Mary hated that I lived here and helped her. The daughters told her if she didn’t want me here, the only other option was a nursing home, since there just wasn’t anyone else to do it. Mary chose me, but resented it for a long time. Oh, well. I’m here and I’m staying, and we’ll manage. I think it is important to remember that, although Elly may be fairly early stage, she is still beginning to think like a two-year-old. You don’t negotiate with a two-year-old about the important things. You tell him/her, “You hold mommy’s hand when you cross the street.” Period.
Obviously, only you and AH can decide when enough is enough. I can’t honestly say that if Mary had been my own mother, I would have continued to care for her til the bitter end. The way we do caregiving in this country, without extended family for the most part, and with very little help, can be very damaging to the caregiver. I STRONGLY recommend a consultation with the local Alzheimer’s educator. we met with ours several times throughout the 3 years, and she really helped us sort out what our priorities were and how to deal with just the situations you are dealing with now.
I’ll be thinking of you and wish you the best in this situation.
EllysGdaughter said on October 17, 2012
Dear Kristin,
I really, really appreciate your perspective and advice! I will call the local agency on aging and figure out who would be able to meet and work out our priorities together! Just some outside perspective when things get rough really helps. Someone mentioned to me that I could get paid for caregiving but we’ve avoided that whole issue because we didn’t want to disturb her Medicare benefits or whatever since we live With her in her own home and only provide the caregiving and buy groceries/household goods and occasionally RX at Costco (the cheap ones). She pays the utilities, mortgage, and most repairs. I should get some perspective on that too. . . She has given me so much in my life that it’s really not an issue of can we afford to take care of her.
ejourneys said on October 18, 2012
I think kristin hit the nail on the head. Elly won’t know when the “time comes.” She will have to follow your lead.
I’ve had to learn to deal with my partner’s anosognosia — her lack of psychological insight. She’s an expert at rationalization. It’s not denial or making excuses, it’s her perception of reality.
Dr. Xavier Amador’s work has helped me tremendously (http://www.leapinstitute.org/). I don’t try to argue reason with my partner when she’s irrational. I try to focus on the partnering aspects: where do we agree on things? How can we meet my partner’s needs that we agree on? Where is compromise possible? Where it is not possible, where do I draw the line?
It’s a moving target any way you look at it. Elly is indeed lucky to have you.
EllysGdaughter said on October 18, 2012
That’s a very good point about reality perception, EJ, I read how you do this and you are certainly the expert!! I want to do this, it just doesn’t come easy for me and I will try to do much better! Your blogs help me to remember how to BE in a situation. I am grateful for having AH who helps me look at where the line may need to be drawn in the future. Thank you so much!
Denise said on October 18, 2012
Hi EG–You’ve received wonderful suggestions and you’re doing a great job so I’ll only add one more thought: Perhaps the nursing of the twisted back is her way of saying, “I can’t do this anymore!” The twisted back takes her out of commission while saving her pride. I think you’ve got her permission to step in and take over.
And, the assumption of her responsibilities can be as easy as you simply doing what she once did. No big deal, no prolonged discussions with her. I think the quieter you take over, the easier the transition may be.
Keep us posted!!
EllysGdaughter said on October 18, 2012
Thanks Denise, I am thinking about that “nursing her back”. . . she was still overachieving after our lunch so I saw it as an excuse for why she didn’t have my lunch on the table. She is so stubborn and refuses to be like her mother who was a Hypochondriac (her words). I have quietly taken over the pills,, I’ve moved all the RX ones to the morning when we are home and all the vitamins to the afternoon which she has missed taking for 3 days and no worries
She only takes 4 RX’s and they can all be taken at the same time 
I am stealthy and quiet. Our interaction has been very positive lately. . . she tries to always put on a smile.
Trish said on October 21, 2012
Hi, EG, The others here have given great suggestions and support and I echo their wisdom! In my situation with my brother, I took over his care much later than I should have. Dad was supposed to be watching over his finances but when I took over, I realized Robert had been scammed through phone call solicitors and magazine subscriptions (every time he got a reminder, he paid! Some subscriptions were paid for years ahead of time). His safety was an issue, too. He was falling a lot more and he and his companion would walk everywhere. I took over when he developed a life-threatening infection and then realized he could no longer live independently with just oversight. It was gut-wrenching but we found an assisted living facility for him, closer to me so I could handle his neuro visits, etc.
I guess my point is similar to the others – Elly will not be able to say “now is the time to care for me or put me in an assisted living facility.” Robert couldn’t tell me that (in fact, he wanted to live on his own still) but it just wasn’t the best, safest decision for him. You and AH are wonderful caregivers to Elly and only you will know what is best for the two of you and for her.
I wonder if you can use the back pain to get her to see her doctor and then maybe enlist his help in suggesting she let you help more. Sometimes hearing it from an objective observer is easier.
Take care!