A clearer picture is disclosed on my profile; however, I will try to summarize here. Joy (65 years old), my older sister by two years, cares for our mother at my sister's house where she has a husband and the youngest child (23) at home.
I live 3 1/2 hours away, one-way. My sister and I are very close and friends. From the beginning of mama starting the process of moving into my sister's house, my role has been to support sister in ANY WAY she needs including caring for mama, too. Thankfully my husband and I are self-employed, so over the last year I have been able to adjust my work to make day trips as needed allowing me to help overnight and provide day relief for my sister. The commute alone is tiring, but caring for our mother is more tiring for my sister yet she keeps at it because that is a promise she made to our mother.
Our mother moved into my sister's house 14 years ago. Having a family member from a different generation under the same roof was challenging at times, mama was able to care for herself, including driving for the first 9 years. Then 5 years ago, mother fell inside the house. Although there were no broken bones she had a significant blow to her head. She went to the hospital and then rehab to learn how to stand and walk again. We told her to be able to come home she had to be able to walk and care for her personal hygiene. That happened with mama coming home using a rollator. My sister had replaced mama's bed with a hospital bed while she was in rehab.
Mama was okay for about one year, then without warning one evening she could not stand or walk. She has been bedridden at my sister's house now for 4 years and 8 months. The last 2 years mama has been non-verbal, cannot feed herself or hold a cup to sip. The majority of the time she does not seem to know who we or anyone is. The last 2 months mama's diet has changed to baby food, puree foods and Ensure because she no longer remembers how to chew foods.
Mama literally does NOT move her body on her own. Bathing, changing her and the linens is totally exhausting moving a dead-weight body. With work we can bend her knees. Her hands are crippled with arthritis and shake continually. At times, on her own, she can move her right arm from the elbow very, very slowly but shaking.
The last 4 years 8 months my sister can't get away overnight unless, I go stay with our mother. Because my sister has a family and the location of the room, she is not able to have an overnight caregiver, unless it's me. My sister lives in a rural area and has previously hired caregivers to assist with mama during the day; however, for different reasons that has not worked. Certainly for several hours in the morning and later in the afternoon, mama can be left alone with the TV or movie on.
Caring for our mother has definitely taken a toll on my sister's mental and physical health, particularly her back and neck. Also her 3 children resent their grandmother because of the care that she requires and seeing the physical toll it's taken on their mother. Plus, her being unable to have freedom to do things with them and her own grandchild.
My sister does not want to move mama to a NH/SHF because of the promise she made. She believes mama's detailed care, with change, will be less due to circumstances (i.e. trauma of moving mama at this stage and her not understanding, catheter will be used so there will be UTIs). During the last 5 years, mama has not had any sickness, colds, UTIs or bed sores under my sister's care. She has stated that if she goes to see mama in a facility and she is not receiving the same level of care she was providing, it will make her feel guilty. Also if mama dies soon after being moved, she will feel guilty.
My sister's family and siblings have given Joy permission to (and think it is best) to move mama out of the house. It's like my sister is caring for mama so well it's not allowing her to pass.
Promises we make when times are good often cannot be fulfilled. We aren't gods. We aren't saints (bad job description anyway). We are human beings with human limitations and with a right to our own lives.
As to guilt, it belongs to felons. They are evil doers who operate to cause chaos with malice aforethought. They seldom feel guilty. What your sister is feeling is not guilt for her human limitations, because surely she understands she is not omnipotent as a god. What she is feeling is grief. The other g-word. Grief that her Mom is suffering, grief at seeing it, an inabillity to sustain the despair that things will not get better for Mom. She is having a hard time enduring that knowledge.
Not everything can be fixed. That mom is now in the condition she is cannot be fixed. And that sister is unable to come to acceptance MAY not be able to be fixed. And almost certainly it is not easily addressed by a family member.
I would encourage your sister to seek therapy with a licensed social worker in private practice. She is currently making a choice to give up her own life. Only she can make the decision for herself and her family whether or not to keep doing this. It is her own decision, but a therapist may help her see the options, and understand that she does deserve a life of her own.
I am so sorry. This is just a lot of hurt all the way around. My heart goes out to you. Understand that on some level you are BOTH enduring watching grief and loss up close, with the inability to fix it. The awful truth is that not everything CAN be fixed.
What will happen is foreseeable. Mama's 92 and going to die sooner than later. Sister will feel guilty no matter how that happens. She may, by that time, be dead or in chronic pain from physical and mental ailments brought on by caregiving. You will, at the very least, have exhausted yourself. Parts of your family will have moved on from the drama and may not be speaking to each other.
What would happen if you refused to drive the seven-hour round trip anymore?
You could do that.
How would Joy react if you suggested an outing for the two of you to visit a care facility that you've researched so that your sister can see the good care provided? Maybe she needs to know that such places are not full of torture devices and monsters. You could show her that. They might even invite you to free lunch in their dining room.
Please do some research into such places and present the information to your sister.
It's ironic that your sister's name is Joy, a lovely name bestowed upon her by your beloved mother, whose care seems to be sucking every bit of joy from your sister's life.
I'm very sorry that this is happening to all of you, but you (plural) could stop it.
I hope Joy used your mother's funds for the times when there were caregivers.
Why is Joy such a martyr? Was she always this way? Did your mother groom her to become her eventual caregiver?
Could all the siblings have a family meeting to try and convince Joy to give up the 24/7/365 caregiving? It seems that when she resumes caregiving after her hip replacement, that it might hinder her healing?
I can't blame Joy's children for feeling resentful. Their mother has clearly placed their grandmother's wellbeing above her own. Their mother doesn't see herself as being worthy enough to have any sort of independent life with physical, mental and emotional health.
We all know the answers to those questions and hopefully your sister will as well.
You wrote,"Because my sister has a family and the location of the room, she is not able to have an overnight caregiver". A caregiver will not occupy any more space than your sister so I am a little confused about what you are saying. Foley catheters are NOT routinely placed in NH/SNF situations because they can lead to a urinary tract infection.
You wrote,"It's like my sister is caring for mama so well it's not allowing her to pass". Yes, substandard care can certainly hasten death, but is that what you really want?
And if not, she’s ruining her back and neck , ruining her own quality of life.
Sorry to say but your mom has little to no quality of life. Try telling your sister that you don’t believe your mother would want your sister to be doing this anymore . That your mom would not want to be ruining your sister’s health Tell your sister that when that promise was made mom most likely assumed the heavy caregiving would not have gone on this long .
If your sister is not willing to move mom to a facility at least hire more help to come into the house if your Mom has money to be used.
This is a tough one. I’m sure no one expected this to go on for so long . Sometimes promises have to be broken . In this case for your sister’s health , she should step back from the physical caregiving .
Best of luck .
Your sister is blind to the reality of this situation. She’s lost, confused and unfortunately has to see the facts for herself. Nothing that you or her children say will change how she feels.
Just like an addict cannot hear what others are saying to them, nor can a person who is codependent.
How do I know this? I was there myself. I took care of my mother for far too long. It took lots of therapy, support from this forum and an ‘in person’ support group to wake me up.
I hope that something will click in your sister’s head one day and that she will see that this type of ongoing care is not helpful to anyone. Your mom does need the care of a complete staff at her disposal. It truly is what is best for everyone.
Wishing your family all the best.
You've given sis permission so she understands no one is going to be mad about a move. Now she has to come to terms w/it in her own heart. Hard thing. You might check in to home health help in your area or even hospice care. Might offer sis a little relief on days you aren't there.
If your sister is deemed physically able, then suggest family counselling with a qualified mental health provider. It seems that your sister is not willing to consider how her current "work" is impacting the rest of the family. A counsellor may be able to help her - and the family - investigate other care options that meet everybody's needs.
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