Stroke, dementia and a sense of isolation

For some years Mum had demonstrated senile dementia. When things weren’t going smoothly for her she would proclaim adamantly that it was I who had the problems not her.

February 2011, my Mum had a massive stroke, the first of three to come. Although on the surface her stroke recovery symptoms appeared to be minimal, the vascular dementia changed Mum’s mental and physical behavior dramatically, from the Mum I knew one minute to a complete horror movie actor minutes later. Mum falsely presented as a person with Schizophrenia. So many times I walked away from visiting Mum, so hurt, so upset, so fearful that she might be committed to a mental asylum for the remainder of her ageing days. I dreaded the thought that this could become a harsh reality. Hugs right now would be good timing I use to think.

Recovering from Stroke and inheriting Vascular Dementia at the same time, results in the Family Carer confronting the harshness of reality that life ahead will be short lived. The probability of entering a Nursing Home and the logical outcome of this, for your loved one will become quite an emotional journey for the both of you.

It’s now off to a Nursing Home – so say the Neurologists

Mum knew she was not well, that she had had a massive stroke. Emotionally and repeatedly she would hold her head and ask me ‘why is this happening?’. She believed she was behaving normal, but she knew she was sick and that it was serious. Those around her wanted to constrain her and she didn’t know why? With Doctors proclaiming Mum had only days or weeks to live, she was bundled off to a ‘Secure’ Respite Ward, within a local Nursing Home that you needed a security code to enter or leave the premises. Needed hugs to process all this information.

Isolation fears – in a Nursing Home

Living in a Nursing Home, regardless as to how friendly and welcoming the Nursing Staff are, or other Residents might be, or how smiley the environment may beam, a sense of isolation is a real fear for the newcomer. I still hear Mum repeatedly say “don’t ever put me in a Nursing Home” ! No more hugs for me now.

One of the most important and close needs of a stroke – dementia resident in a Nursing Home, is to stay connected to the outside world they lived in and enjoyed, with as much normality as possible. I tried to meet this need by sustaining some familiar activities. Making sure all of Mum’s family, relatives and friends knew where she was with regular updates on her progress, plus providing her mailing address and visiting hours. Mum received weekly the local newspapers and weekend newspapers, plus a telephone with a direct outside line placed beside her bed. Some treats for mum included home cooked biscuits, fresh flowers, magazines, regular visits to the on-site hairdresser, pedicures and manicures.

Settling into a Nursing home for some can be extremely traumatic and yet for others acceptance just never happens. An overwhelming insecure sense of isolation floods the emotions. Feelings of being ‘locked up’, restricted, imprisoned and the surrounds never becoming familiar from one day to the next. Lost in time, lost in emotion, frightened, feeling isolated, feeling captive, strange faces and strange surroundings constantly presenting itself.

Behavioural changes and impact

Mum needed hugs. All these very deep and very real emotions impact behavior of the stroke – dementia person. Behavior with family, relatives, friends, the other residents in the facility and the staff of the facility are impacted. Behavior may change to that of child like or it may change to being an aggressor. The more changes to behavior the greater the impact to the surrounding environment within the Nursing Home. Then a need presents itself for the staff to take a stronger observance and if necessary a control stand. Sometimes behavior does warrants intentional isolation to prevent harm to the stroke – dementia person themselves, to other residents, staff or damage to the physical premises.

Isolation fears – by Family and Friends

A second and most important need of a nursing home resident, is for the family and friends not to feel isolated from their loved one, the stroke – dementia person. Family, relatives and friends react to stroke and dementia in many different ways mostly from the lack of education and understanding of these health issues. They need hugs too, but at times I also felt they needed a good swift kick in the pants.

Family and relatives fall into denial and grieve of the emotional loss of that person, as if there has been a physical loss that hasn’t yet happened. They express quite lightly that the family member will get better soon and be home soon. Followed by a few or rare visits anticipating the person will return home and everything will return back to normal. Just wishful thinking.

Friends on the other hand take a different perspective. Generally friends are around your own age group and have already taken on board the reality of ageing and their knowledge of what may lie ahead. Friends of your age group already see these types of health issues and the outcomes day after day. It was my experience, to have five of Mum’s friends tell me on the phone, by letter, to my face that they would not be visiting Mum in her Nursing Home and asked for me to just let them know when she was gone, so that they could attend her Funeral. Hugs anyone?

Normally, Mum had a life of a social butterfly, President of Probus, in Senior Citizens, the local Garden Club, Meals on wheels and many other activities. It saddened Mum and I felt it too, that few family visited Mum and even fewer friends visited. Visiting and keeping up the pretense of the outside world eventually came back down to a task held by myself, supported by my two adult Children and only two lifelong loyal friends to Mum.

Mum thrived on company and loved to have fun, but over time she became quite depressed and frequently cried. She missed the contact with family and friends.

Mum’s health diminished and her memories drifted, although not all memories were completely lost, they were however lost in her galaxy of time. Gradually, I witnessed Mum ‘raise’ her own life time of memories in a spiritual sense. Her mother and father returned, so too did old boyfriends and husbands, school friends, and all her wonderful family and friends were regularly visiting her, in her room, staying with her, chatting to her, protecting her and she was so smiley and happy, quite child like. Many a visit she would not talk about a particular topic with me, because of who she believed was in the room.

It’s funny how the mind works and how it finds a way to right a wrong. How it provides the comfort needed in place of the physical hugs. Mum wanted a hug, wanted to still feel loved and found comfort in her own insanity that which left me frequently leaving her company questioning my own sanity.

A positive attitude and ‘stubbornness’ on Mum’s last journey gave her much comfort and accommodated her ‘sense of isolation’.