Barbara, I am caring for my Mother in our home. She is in denial over her situation. She is bed bound but insists she is going to walk again and go back to her apartment and live on her own. I want to be encouraging but she will decide she wants me to get her up and go for a walk. When things are not happening she gets frustrated and that frustration turns into anger towards me. I know she loves me and that we just tend to lash out at the people we love the most. I wish that we could somehow let her stay in this denial but it is not turning out to be a happy or positive place. She is always waiting for tomorrow to be a better day and realistically her best day now is as good as it is going to get.
Another problem we are having is that she is not being honest about new pains and symptoms. We have nurses coming in daily and also have Hospice involved. She takes very little pain medication as she "is afraid she will become addicted to it.” The nurses and doctor have told her over and over that she needs to take the medication when needed but she explains everything away. The last of our worries is that she doesn't want to pay for any of the things needed to take care of her. She thinks she doesn't need some of these things, but for her own comfort and to care for her properly they are a must. So my husband and I have taken on the financial responsibility of everything (renting a hospital bed, commode, diapers, bed pads, special creams, the increase in our hydro bill for her oxygen machine, etc.). Her money is going into an apartment that she can never get back to living in.
You have said we die as we lived. Well, my mother is a very stubborn person and it is magnified ten fold now. I am just not sure if between her denial and stubbornness we can manage her care from home. I love her very much and want to take care of her in her final days but don't want our frustrations to ruin the wonderful relationship we have always had.
I just have to end on a good note as I don't want you to think this situation is all bad and stressful. Caring for my mother has brought us even closer. We have lots of talks, we laugh, and we cry. I know that when her time comes that we did everything we could for her to make her final months/weeks/days as good as possible and surrounded by the love of her family.
I appreciate how much you love your mother. I see the challenge you are dealing with in her attitude and behavior. As much as we love someone our feelings can turn to frustration and even anger as our efforts to care for them are sabotaged. I am glad to see you have nurses to assist you. You mentioned Hospice. Is it a Medicare certified hospice? Because if it is they should be paying for the hospital bed, her oxygen, and any medications that are related to her life threatening illness. Hospice also has a Social Worker that would be a good source of support for you. Talk to her about the challenges of caring, and your mother’s denial.
It appears her denial is interfering with her safety as well as her being able to appreciate each day. I think you have to be honest and direct with her, even if she won't appreciate hearing what you have to say. "I know you want to go for a walk with your walker but your body can't support its weight anymore. Shall we try to get you to sit in the chair instead?" You can gently remind her she has a life threatening illness, as you said in this email "this is as good as it gets.” You don't have to dwell on her illness and weakness but don't agree with her in her denial. "No, Mom, you won't be going back to your apartment. I'm sorry but the disease isn't going to let that happen." "This is how things are now, Mom. Let's do the best we can." You can be positive and truthful at the same time. You will have to be the firm, stable one.
You can be firm yet loving. When she is angry and lashes out at you, tell her that that is not okay, you understand her frustration, but don't direct it at you. You must take care of yourself or you will not be able to continue to care for her.
About the pain medication, the most common fear people have is of becoming addicted. What about having the nurse explain to her why she isn't going to become addicted? If she is not having pain related to her illness what is the pain medicine for? Why is she taking it? Does it need to be given routinely, on a scheduled basis, rather than on an ask for basis? It could become just one more of her pills that she takes without an issue being made of what it is.
As hard as it will be to not only read, but follow through with the advice in this coming paragraph, know that I give it with gentleness and concern in my heart. We can set limits and still be gentle, understanding and loving.
Rereading your email, it sounds as if Mom is running the show (from her unrealistic perspective) and it is time for you and your husband to stand up to her and take charge. You can't continue to let your lives be dictated by someone who is not looking at how others lives are being affected by their behavior. Just because she will die someday doesn't mean she can have everything the way she wants. We often see our elderly and sick acting like little children with their demands and we become like adults giving in to a badly behaved child. If you and your husband don't begin setting some limits, I agree you will reach a point where it is just too much to care for her in your home.
Something more... about Caring for Mom at Home
I would encourage those caring for a loved one in their final act of living to sit down with the whole family and watch, NEW RULES for End of Life Care. It helps the dying and the watchers understand what is happening in the months to days to hours to minutes before death. In a non-threatening way, the film will allay fears about pain medications, narcotics and addiction, and dehydration.
