Burden of a Family Caregiver

Alzheimer’s is not a high profile disease that attracts funding. Reality is that in most countries, the burden of caring for the victims of Alzheimer’s falls on the families. Unfortunately, Alzheimer’s  funding isn’t ‘sexy’ in today’s world. Breast cancer and child leukiama, for example, are.  They attract research funding much more easily (and add prostate cancer to “the non-sexy” list).

 

In my family’s case, the financial burden fell on my father. Nursing homes are expensive. At the time, my ‘retired’ father had to pay over $2,000+ per month after tax for my mother’s care. This on top of the normal day to day expenses and any medical needs she had.

Others are not so fortunate and have to dissipate their retirement fund – if they have any! Add to this the emotional and healthcare of the caregiver themself and dealing with the stress, the potential loss of social interaction, and the pressure these stresses place on relationships and family members and its not hard to understand the burden caregivers have to manage. 

 

My father enjoyed working but because of my mothers illness my parents weren’t able to enjoy the typical retirement lifestyle. When asked to speak on behalf of caregivers he stated “I worked since I was 17, paid all my taxes, become a self-funded retiree but felt I was being financially penalized because my wife had the misfortune to contract Alzheimer’s disease.”

My mother was cared for at home for all but the last months. Simple tasks she used to do became tasks we did, for example buying clothes or any shopping trip; we had to quietly communicate my mother’s condition to salespeople without her knowing.  This involved carrying a small business sized card that we discretely slipped or showed to the shop attendant.  We found it easier eventually to just frequent shops that were aware of my mother’s condition. She gradually lost the idea of how to use a knife and eventually a fork. We had to devise “mom-friendly” meals.  By the time she reached the nursing home; she had to be fed by hand and only on pureed meals. Toileting became a problem as she became doubly incontinent.  Incontinence pads were resented, protective pads/sheets required on beds, chairs and car seats. Any dignity or privacy was basically lost to her.

 

During her respite stay, the staff said that she was still very “aware” and unable to come to terms with her inability to perform physical tasks; my mother was very frustrated and made life difficult for herself and those around her; Although very, very rarely violent, tried to escape through window. Eventually, she had reached a point beyond our care and where professional attention was required. She could barely recognize my father and didn’t always recognize myself, my brothers or sisters, let alone her 5 grandchildren. This was a harrowing time for all of us and became the start of an extended grieving process.

The result was we placed her into a ‘dementia specific’ nursing home where she was free to roam around and had several activities she could do without being able to wander out of the home, due to locked doors and windows.  All under the supervision of remarkably dedicated and underpaid nursing staff.   My father found it difficult to ‘pluck up’ the courage to take the step feeling that it was the beginning of the end and the real end of his 49 year marriage. He and/or a member of my family visited every night to be with her and assist the nurses where we could, but she couldn’t walk, by shortly after could scarcely talk. 

One of the really sad things was that she didn’t ever get to enjoy her grandchildren, nor did they get to enjoy her. Her inability to recognize them, their age and the confusion about ‘grandma’s’ condition, helped in the family making the conscious decision of not taking her grandchildren to the nursing home.

Did my mother undergo mental torture as she struggled to talk to us? I’m sure she was but how could we really know?  She couldn't tell us! . What we can relate is how gut- wrenching it was to hear my mother repetitively say “I don’t want to live my life like this”;“I’m frightened”. A tough time for any caregiver knowing that you really cant help and can only try to distract or make comfortable.

There is still no forecastable pattern to the disease in any one person. Geriatricians are unable to predict with any accuracy how quickly, widely or deeply any one sufferer will be affected. In my mother’s case, she lost her physical abilities before her mental capacity to understand. This of course created much anxiety and confusion for her and difficulties for us.

 

As a nation, and in my own country of Australia, most caregivers i meet have the same hope ... that somehow more funding and research will be done to reduce the incidence of dementia and therefore reduce the number of sufferers and the resulting trauma of the caregivers. But until a solution is found there is a need for more support facilities for the caregivers – day care, respite care, and permanent care, less financial impact on caregivers, more professional caregivers with better pay, more community education on Alzheimer’s on how caregivers access facilities and support systems.

 

Finally, a need for more community education and understanding that dementia should not be considered a dirty word and is currently something that could affect you as a caregiver or a sufferer at some point in the future.

Caregivers have a great gift to share with each other — their stories

A few weeks ago I attended a local support group meeting. Later I was thinking about the number of support group meeting I had attended over the years since my mother passed away and the number of people I had met. Some had only recently found themselves in a caregiving situation while others had been in that role for some years. I realized that in almost all these meeting there were only a handful of people who had been through a caregiving role and the eventual loss of their loved one.

I started thinking about the possible reasons for this departure from the support group community. I assume in many cases at one time former members of the support group shared feeling of grief and anger. While it is totally understandable there is the factor of distress and grief after the death of their loved one and having to find a way to move on (everything has a time and a place). I began to also think about and recognize the gift experienced participants have to offer to support groups even after the death of their loved one.

I then recalled one time we had a caregiver and wife in one support group who would relate the difficulties she faced over the years of caregiving for her husband to the group each meeting. In mid to late stages her husband would frequently become angry and occasionally violent. How some people had suggested a range of options or that she seek professional care for him, and then there were even those outside of the situation itself who had suggested that after almost 48 years together she divorce him. All along she showed strength of character and inspiration to others in the group despite the grief and anger. She spoke of the lingering disbelief and years of loneliness that dwells with many in support group families.

She taught others that the most difficult times eventually pass and that patience, love and peaceful days can find their return. She taught about stretching beyond the grief and anger by reaching out to those who share a common path, how difficult it can be for caregivers to feel that they have the energy to open up to others. She may have felt that same reluctance in the early years. And yet, she's an example that on the other side of isolation sits connectedness, offering a way to greater resilience and ease. And perhaps what I love the most, she is an example of living through life's heartache with dignity and grace.

After the passing of her husband just one month shy of their 55^th wedding anniversary she continued to attend the support meeting before announcing to the group that after many years of attending the support group, she felt she didn't have much to offer anymore. She said perhaps she should move on.

Form the support group perspective her gift was her willingness to be vulnerable and to share her story, her beautifully imperfect life — a life that offered lessons in resilience, dignity and hope. And when she shared with others (and us) in her support group, the notion that we were disconnected dissolves. Perhaps this was the gift she received in return.

Without a way to share stories and struggles a caregiver experiences, we are all left feeling lonely, indifferent and out of touch with our life's meaning and purpose. We can end up feeling unworthy, unloved and even sick. Sharing and telling our stories with others who will listen and who really care may be the most powerful medicine on earth.

I encourage you all to find ways to connect and share your story — this will be a lasting gift to you. Listen with empathy to others who share their story — this is the gift you give to one another.

Know that “You Are Not Alone”.

In other  words, "it will be all right."

At Some Point It’s just Time

Most of us can probably remember a time in our lives when we promised something to our parents and then chose to do the exact opposite or at least not think first before making a decision which in hindsight is actually what you had promised not to do. When my mother was first diagnosed with Alzheimer’s I naively believed that I could handle pretty much anything that we had to do. My mother made my brothers, sisters and I promise to allow her to end her life at home.

We managed to keep her at home for almost 11 years before it became obvious that we just couldn’t manage it any longer. For much of that time she was on a trial drug program which we believe now prolonged her quality of life for at least two years longer. But after being advised by the doctor and after many heart wrenching discussions and family debates, we as a family decided it was time to accept that we could no longer care for her at home.  Emotionally our thoughts always seemed to go back to the idea that taking her off the test drug and placing our mother in the nursing home we were somehow signing her death away.

Circumstances change almost daily for the Alzheimer’s patient, their families and their caregivers. Planning ahead is near impossible. In fact, my parents had dreams of travelling in their retirement. My mother wanted to visit Ireland, my father wanted to visit former work contacts from various places around the world. But once the diagnosis progressed this became more difficult to do. Reality of Alzheimer’s is there is no way to predict the progression of this disease. Each individual is different, different symptoms, different behaviors, and different time lapses between each. Some behaviors related to Alzheimer’s have their own issues. Issues that only another caregiver could understand; “sundowners”, “repetition”, “obsessiveness”, “want to go home.”  Some, Not all, Alzheimer’s patients may become violent.  One caregiver may find a behavior particularly hard to endure, while another caregiver may be disturbed by a totally different behavior.  

Many Alzheimer’s patients yearn for “home,” the place of their youth that no longer exists. They’ll walk and walk and walk, if unprotected by open (unlocked) doors. Much like a young child, they can be in grave danger of becoming lost or walking into traffic or accepting a ride from a dangerous passer-by. If you aren’t able to keep the patient in a well-protected, locked area, you may want to look for other living facilities. Eventually, no matter how hard the family or caregiver tries, there comes a time when you realize that the Alzheimer’s Patient just needs more care and may need more medical treatment than you, the caregiver, is able to provide. It’s time where the best option is professional care in an Alzheimer’s specific care facility.

My father began searching for the right place for our mother to go. The thought was not a happy one, we all dreaded it. We knew the search would be awful, thinking we’d never find one that met our ideal situation for our mother’s care. In a way we were lucky because as a result of my father’s career success, he was in a slightly better financial situation than others. He still commented on the fact that he felt like he was ‘Hawking’ my mother like some product for sale, trying to sell the nursing homes into ‘Accepting her’ as a resident rather than them wanting to help solve our issue by placing her. A situation we later expressed at numerous conferences and groups as we represented caregivers of those who were unfortunate enough to be diagnosed with Alzheimer’s or any other dementia related disease and the day to day issues that are dealt with.

Eventually we found a place where my mother would end her days. Thankfully it also happened to be the place she had been too previously for day respite. A vacancy had opened and we were able to get her placed there. But then we realized that the vacancy resulted by someone else’s family member had passed away and they were mourning the loss off their loved one. AND that’s why the vacancy became available. For the remaining time of my mother’s life my father, brothers, sisters and I would spend numerous evenings at the nursing home trying to help the limited duty nurses with my mother and other residents. We watched her deterioration of the next six months all the time hoping her pain would end soon. Even after my mother’s passing we still had the feeling there was an obligation on behalf of her for us to do whatever we can to help others through the caregiving role.

Final Note:

My parent’s dream of travelling was fulfilled somewhat towards the later stages.  They did travel to Ireland and then to the United States to visit friends on a final fling. But when we look at the photos of that trip in the majority of them my mother just looked lost and confused. All except in one photo. In that photo she looked like she knew exactly where she was, but in the background of that photo are the Twin Towers which only a few months later were to become a reminder world wide of a tragic and horrific event.

Random Tips & Insights From other Caregivers

As a family caregiver, you may find yourself facing a host of new responsibilities, many of which are unfamiliar or intimidating.
At times, you may feel overwhelmed and alone.
But despite its challenges, caregiving can also be rewarding. And there are a lot of things you can do to make the caregiving process easier for both you and your loved one.
I have created this post to provide Others who are in a Caregiving Role to provide their own Tips & Insights that other caregivers may find of value, help find solutions or just provide that little bit of extra strength to meet the day-to-day challenges that caregiving provides.
So here is your chance ... Post your tips or Insights and thank you

It's Friday ... let's relax and have a laugh

Over the years I spent dealing with my grandmother, my mother and later my natural mothers diagnosis ... there were numerous times amongst all those other times you struggle along where things happened that just made me laugh or at the very least smile.

 

Being a friday I thought I'd see if anyone else wanted to provide an insight into those various situations we as caregivers just have to have a good laugh about, situation or occassions that something happened either around our loved one or that involved tham that was one of those OMG moments.

 

Let's face it at some point all you can do is laugh at yourself or the situation and it in some small way helps us cope with the day-to-day

so go on let's relax and have a laugh together.

Join Me – Donate your Brain to Research to Find a Cure for Alzheimer’s

Reality is ... that  the only way to know 100% if someone has Alzheimer’s is by completing an autopsy. And yes ... I can tell you it was confirmed that my mother did in fact have Alzheimer's.

 

Even though Mom was formally diagnosed with Alzheimer’s disease years ago and has now been gone for several years, I recall the initial reaction I had when I was told the story of how both her and my father had made the decision to donate their brains to research.

 

My mother had volunteered to be part of a drug testing program at the time, known today as 'Excelon'. During the initial setup and testing for the program she was asked to consider the concept of donating her brain for research. Apparently, and typical of my mothers community minded spirit she readily agreed, but then came the twist. She looked over at me father who had accompanied her to the testing of course and just gave him that look that wives seem to always have. That unspoken way of saying "WELL!!!!" ... the end result was that both brains were now going to be donated for research into finding a cure. My father's only comment was to say "well I'm using it at the moment but when im finished with it ...."

 

All these years later this brain donation story has become a source of humour in the family. Apart from the obvious legal aspect of setting up the inevitable time where the brain actually changes hands and any updates or renewals to the paperwork involved. Every so often my father, comments about having to go to the brain bank. This is followed by a barrage of terrible puns and other comments relating to:

1. Does he still have the brain and do they still want it?
2. Is he caring for it or is it somehow getting damaged?
3. After the testing ... will he get it back ... because he is still using it?

Despite all this joking there is a serious reality that families really should discuss openly and with the goal of preparing for the future ... The human brain is complex and difficult to study in living people. It is also too complicated to replicate in the laboratory. Therefore, much of the research into Alzheimer's disease and other dementias relies on examination of brain tissue that has been donated after the person has died. This research allows scientists to investigate the basic underlying causes of dementia and, if possible, to discover how they relate to the symptoms experienced by the person during life. This work is also essential for observing the effects of currently available treatments for dementia. Better understanding is the first step towards better treatments.

 

Many people with dementia and their relatives are interested in the possibility of brain donation for research after their death. Scientists are very grateful for the generosity of the families concerned, especially as this process has to be carried out very soon after the person's death. To ensure this research is thorough, it is also extremely important to have access to brain tissue from people who do not have dementia. This is known as control tissue, and is in even shorter supply than tissue from people with dementia. It is crucial that scientists have control tissue so that they can compare it directly with tissue from a person with dementia. These valuable donations are essential for developing new and better treatments for people with dementia and in the search for a cure.

 

Brain tissue donation must occur as soon as possible after death, ideally within 48 hours. Since this is a distressing time for the family, it is important to discuss brain tissue donation in advance and make sure an arrangement is in place. With research by family members arrangements can be made to assist with the process and in many cases the funeral director can also take on the responsibilty if organized in advance. It is a short procedure and does not interfere with funeral arrangements. The body is then returned to the funeral director chosen by the family.

 

In my case I'd like to believe that I will still be using my brain for some time ... but then you never know ... in the meantime its a worthwhile discussion to have with your loved one .. let's face it .. as a caregiver I would prefer to see a cure than have to go through a caregiver role or even worse be the one requiring it.