That time during the dementia disease process when your loved one is definitely showing signs of their illness, but not willing to concede that they have any limitations. That time in a caregivers journey when you are still a daughter or son or husband, and not really a “caregiver” yet. When mom or dad or wife still insists they can do things, when really, they can’t do it that well. I would suggest this is one of the most challenging stages of all…fraught with frustrations for both parties, heartbreak, and stressed family relationships.
I am imagining more that a few nodding heads, because I have talked to a lot of you who are in this stage. How do you tell Mom that she is sporting blue eyebrows because she used the wrong makeup pencil when she put on her make-up. And how about the husband who willingly offers to help put the groceries away, but puts the ice cream in the pantry…only discovered hours later when it starts to seep out the door. What about your Mom who is wearing dirty clothes (the same outfit as the last 5 days) because she insists that she can still take care of her own laundry. (And who are you to tell her she can’t?).
These are tough situations, and I am sure you can come up with a million more. Tough because your loved one is changing before your eyes, and tough because your life is changing too. I can only tell you, from listening to the stories of many other caregivers, that this stage will pass. Unfortunately new challenges come with the new stages, but let’s get through this one first. As we say in support group…one day, one hour or even one minute at a time.
My best piece of advice, gleaned from listening to others who have walked this walk, is not to argue. Get over the idea that mom or dad or wife or husband is doing this on purpose just to spite you. Their brain is changing by the day, and at this stage of the disease, they are no longer capable of rational and logical thinking. You are fighting a losing battle, so stop fighting.
Get creative and start thinking one step ahead. Through all stages of this disease, you want your loved one to be as independent as possible, but you have to recognize what their limits are at each stage. Don’t test them when you know they will fail. This will just make both of you frustrated.
If mom has been wearing the same dirty outfit for 5 days and keeps telling you she can do her own laundry…quietly accept that she can’t. But don’t tell her that, don’t argue about it. The problem is the dirty clothes (not mom). I have talked to caregivers who sneak in during the night to pull out dirty clothes, launder them, and then put them back right where they found them. Others purchase two identical outfits so one is always clean and can be swapped out unknowingly. The goal is to have mom in clean clothes, not to prove to mom that she is wrong and can’t do it.
Gladly accept your husband’s offer to help put away the groceries, but perhaps only give him things that go in the pantry. And remember to go back and double check his work when he is done. The critical part of that is to be sure he doesn’t see you double checking. At this stage, you want to promote independence, or at least the illusion of independence, as long as possible.
I urge you to redefine the problems. Mom or dad or wife or husband ISN’T the problem. The problem is the dirty clothes, or the uncombed hair, or the misplaced tv remote. Mom, dad, husband or wife isn’t the cause either. The disease is the cause. And unfortunately, mom, dad, husband or wife, doesn’t have the solution either, no matter how loud you yell or how frustrated you get. The solution must come from you. Be clever, be creative, and be calm. The in-between stage is a hard one, but you will get through it…one minute at a time.
Christina Forbes, LGSW from the Daybreak Newsletter 8/2013