Challenges of Providing Long-Distance Care for a Parent
- Cancer & Caregiving
- February 17, 2014
There are many times when you are a caregiver that it really does not matter what disease, disorder or affliction your loved one has. What matters is quality of life for everyone. That means your loved one, and it means you.
It sounds so matter-of-fact. Maybe it is. But so often it is very difficult. Many times, what you know is the right thing to do is not what your loved one wants. You believe, given what doctors and other professionals are telling you, that you know what the smartest decisions are related to care and everyday living. And yet your loved one says sometimes forcefully, “No.”
It does not matter if you are caring for someone with mesothelioma, some other asbestos disease or even if you are dealing with the after-effects of a heart attack, stroke or something else. This one disagreement can be the starting point for an emotional rollercoaster that can last weeks, months or even years.
Mother Returns Home After Respite Care
This issue comes up because my frail 86-year-old mother insists on living on her own, and those of us around her believe this is not the wisest situation. My sisters and I have been dealing with this since our Mum moved out of respite care and back into her own home a few months ago.
Mum, who has Type 2 diabetes and the onset of dementia, was in respite following an accident in her bathroom, an event that left her bruised, shaken and dehydrated. This occurrence and her general condition confirmed our suspicions that she is not able to live on her own.
Mum previously informed us that she was not averse to going into a nursing home and that she planned to do so when she felt the time was right. Believing that the time had arrived, we thought that she would make the decision to move from respite into full time care.
We could not have been more mistaken.
Before her six weeks of respite was up, Mum made it clear she did not wish to be institutionalized. Instead, she asked that we take her home. We could do nothing but obey her wishes.
Hiring a Caregiver for Mum
Prior to taking her out of respite, we spring-cleaned her home and garden, filled the fridge and pantry and removed any trip hazards we found, including a number of scatter rugs that we placed in the shed.
We also arranged for a care provider specializing in the elderly to check on Mum each day and to assist her with any small chores, cleaning or grocery shopping.
This was nowhere near the level of care that she required, but it was the best we could do under the circumstances.
Within a day of being home, Mum cancelled the caregiver and put all the mats back down on the floor. My sisters and I have not had a decent night’s sleep since.
Consequences of Losing the Caregiver
Mum is lonely, and she relies on family to fulfill her needs. No matter how often we phone or visit her, it is never enough. She gets quite upset if we take a small trip away from home and are unable to visit her as usual.
This prevents us from taking some short trips, day trips and long weekends away. When we do take them, we feel guilty doing so.
No matter where we are, we worry about Mum. She is stubborn and refuses to use her walking aides, despite the fact that her frailty puts her at increased risk of falling.
One of the worst things is that we can’t talk to her about her health. The moment we mention something she doesn’t want to hear, she tell us that she doesn’t want to talk about it and shuts off completely. Any attempt to re-open the subject results in her becoming aggravated, hypotensive and, at times, nasty.
As upsetting as this is, we believe Mum behaves this way because she knows she can’t cope, but she is too proud to admit it. She is fiercely independent and has no wish to be anywhere else but in her own home. Sadly, she is her worst enemy. Her refusal to accept help, ultimately, will be the reason she can no longer remain there.
Mother’s Helplessness Affects Us All
In the meantime, my sisters and I find it difficult to get on with our own lives. We phone her every couple of days to make sure she is OK. More often than not, our phone calls result in us feeling more anxious than relieved.
I can tell something is wrong the moment I hear her voice. Usually she is having a sugar attack or feeling nauseous. I know that this is because of her diabetes, and I try convincing her to eat regularly. My advice falls on deaf ears.
The same can be said when I visit her. It is hard not to say something when I see the condition she is in, but her hostile reaction to my comments makes it impossible for me to help her.
Generally I come away feeling upset, frustrated and angry about the situation and my inability to do anything about it.
My sisters are affected in exactly the same way.
Our Mother Fears Losing Her Independence
We are torn between our wish for Mum to be happy in her own home and our genuine concern for her health and safety. Unfortunately, the two do not come together.
We spoke to a number of health professionals about our situation and were told we can’t force Mum’s hand. Despite the onset of her dementia, she is still sound of mind and capable of making decisions. If she wishes to remain in her own home, she has every right to do so. Refusing assistance is also her right.
It is the health professional’s opinion that Mum will have to ‘fail’ at her attempt to be independent before she can accept that this is no longer possible.
Loving as we do, our major concern is: How badly she will fail?
At best, she will have another minor accident. Worst case, it could end her life.
Lorraine Kember is the author of "Lean on Me," an inspirational personal account of her husband's courageous battle with mesothelioma. She is an accomplished public speaker in Australia and is passionate about sharing her journey with cancer. Her website can be found at www.lean-on-me.net.