True love
My Dad is someone who I have utmost respect for, even more so now in his later years.
At 75 , having suffered a heart attack at 58, taken early retirement at 60, when he also had a multiple bypass.He is not quite an “able” man. Still for the last ten years he has given up his freedom to give my Mum 100% of his love and care.
Each day he washes her clothes, irons, prepares all the meals, does the shopping. He is only able to get out a few times a week to get his groceries. He can’t leave Mum unattended and so is completely dependent on others to “let” him out of the house. Be this his family, (myself or my brother) or what he has in place as a care package…(some carers who do a “sit” for a couple of hours so he can get out).
He never complains.
Each Thursday afternoon he attends a painting class. Watercolours are his hobby. He never had the chance to do this whilst we were kids and he was working. Now it’s his only outlet where he can socialise with a few other painters. On a Friday he goes to a social group for Men in the community. I think it’s a Christian organisation. Dad was a minister so this is also a way for him to maintain some of his identity.
Sadly he doesn’t see so many people now. He can’t get out to visit as all his free time is spent getting groceries and doing the basics such as getting a haircut, paying bills, etc. He is fully reliant on us, his children, to get out for such luxuries.
Regrettably I live an hours drive away and also have my own young family and their commitments, so I can really only go down at the weekends to “let him out”.
My brother lives closer but he too has a young family and also a fulltime job.
It’s not easy.
It’s also been years since he has seen my house or visited me…that’s the sad part.
I live so far away that he never can get the 20 mile distance to my house in the brief moment his “sit” allows.
The other Sunday my dad picked a rose from hs garden for my Mum. He placed it in water, kissed her gently and set it on her table. My Dad has shown me the graciousness of a true love that can last through such a divisive illness that my Mum has suffered and it truly can last “till death do us part”.
Each day he GIVES my Mum compassion, love and dignity.
He is a living example of how a marriage that was not always perfect could still stand the test of time. They argued a lot…
My mum was very difficult…but despite this they loved, cared for each other and respected each other.
I worked myself as a student in care homes for several years. It is only after coming through this with my Mum that I realise the true devastation of this illness. For our family it has been a very, very long ordeal. Nevertheless we have been very fortunate that Mum has had the best care, the most recent drugs available and that she was not as aggressive as some sufferers can be.
She has a wonderful “care” package where she has carers who come in four times a day to wash her, dress her and toilet her.
Mum has been treated with dignity throughout and has had a remarkable continuity of care surrounded by some carers who have been with the family now for over six years. They love her and treat her as a human being.
I am not sure why I am writing about this today…
but I do know that over the age of 65 one in four of us will suffer some form of Dementia.
It is a long and cruel illness.
Devastating families in its wake.
Mum was young when the onslaught struck. Only in her early fifties.
Last week she turned 69. Dr’s say hers was related to a head injury, when she had a car accident hitting her head, a few years previous. We shall never know the true cause. Mum was well into her fifth year of the illness before she was diagnosed.
Our family lived in both denial and shock as her behaviour became increasingly disturbing and erratic.
Those days I feel were the hardest. Dad was very very upset, as he took the brunt of her mood swings and aggression.
I myself as a woman was often attacked verbally and physically to the extent I was afraid to visit my own home such were her abusive outbursts and bizarre emotions.
Sometimes she would cry for no reason. The sight of an ambulance or a police car would cause her to cry uncontrollably. Family holidays were a nightmare. She would attack us, then wander off, threatening suicide and making strange accusations. She seemed to have totally lost touch with reality.she lost her ability to care for her personal hygiene. Soon I had to wash her, bathe her and toilet her, along with my dad and brothers too. I remember she would refuse to get out of the bath…I had to call my brother even in the middle of the night to help us lift her out.
It was hard as she was losing her dignity.
She began to lose her co-ordination. Her driving was very dangerous, and thankfully this soon stopped. She lost her Job…She was working as a manager In a hospital day Care Centre for the elderly.
It was when she started mixing up the bloods that the Staff began to notice things were odd and began to worry. Sometimes she would lie down in the hospital beds and feign illness…
I remember my Mum as being very active, lively and articulate. She was a very caring woman. She worked very hard as a mother and eventually as a nurse. She was sent away from home (south of Ireland) at the tender age of 14. Her mother in Donegal had 7 kids and she simply couldn’t afford to send my mum to highschool. She was sent to the North, to look after a great Aunt who was ill and lived with her Dad’s sister. My Mum was very homesick.
She had a close family and grew up on a small, rural farm. They had very little money. Mum told us that she went to school on a donkey. They had no stove even… the fire was still open on the ground and each day they carried a potato from the fire embers to the school along with some milk. Their bedroom had two beds. The girls (4 of them) slept on one, the 3 boys slept on the other. That was how it was.
At 75 , having suffered a heart attack at 58, taken early retirement at 60, when he also had a multiple bypass.He is not quite an “able” man. Still for the last ten years he has given up his freedom to give my Mum 100% of his love and care.
Each day he washes her clothes, irons, prepares all the meals, does the shopping. He is only able to get out a few times a week to get his groceries. He can’t leave Mum unattended and so is completely dependent on others to “let” him out of the house. Be this his family, (myself or my brother) or what he has in place as a care package…(some carers who do a “sit” for a couple of hours so he can get out).
He never complains.
Each Thursday afternoon he attends a painting class. Watercolours are his hobby. He never had the chance to do this whilst we were kids and he was working. Now it’s his only outlet where he can socialise with a few other painters. On a Friday he goes to a social group for Men in the community. I think it’s a Christian organisation. Dad was a minister so this is also a way for him to maintain some of his identity.
Sadly he doesn’t see so many people now. He can’t get out to visit as all his free time is spent getting groceries and doing the basics such as getting a haircut, paying bills, etc. He is fully reliant on us, his children, to get out for such luxuries.
Regrettably I live an hours drive away and also have my own young family and their commitments, so I can really only go down at the weekends to “let him out”.
My brother lives closer but he too has a young family and also a fulltime job.
It’s not easy.
It’s also been years since he has seen my house or visited me…that’s the sad part.
I live so far away that he never can get the 20 mile distance to my house in the brief moment his “sit” allows.
The other Sunday my dad picked a rose from hs garden for my Mum. He placed it in water, kissed her gently and set it on her table. My Dad has shown me the graciousness of a true love that can last through such a divisive illness that my Mum has suffered and it truly can last “till death do us part”.
Each day he GIVES my Mum compassion, love and dignity.
He is a living example of how a marriage that was not always perfect could still stand the test of time. They argued a lot…
My mum was very difficult…but despite this they loved, cared for each other and respected each other.
I worked myself as a student in care homes for several years. It is only after coming through this with my Mum that I realise the true devastation of this illness. For our family it has been a very, very long ordeal. Nevertheless we have been very fortunate that Mum has had the best care, the most recent drugs available and that she was not as aggressive as some sufferers can be.
She has a wonderful “care” package where she has carers who come in four times a day to wash her, dress her and toilet her.
Mum has been treated with dignity throughout and has had a remarkable continuity of care surrounded by some carers who have been with the family now for over six years. They love her and treat her as a human being.
I am not sure why I am writing about this today…
but I do know that over the age of 65 one in four of us will suffer some form of Dementia.
It is a long and cruel illness.
Devastating families in its wake.
Mum was young when the onslaught struck. Only in her early fifties.
Last week she turned 69. Dr’s say hers was related to a head injury, when she had a car accident hitting her head, a few years previous. We shall never know the true cause. Mum was well into her fifth year of the illness before she was diagnosed.
Our family lived in both denial and shock as her behaviour became increasingly disturbing and erratic.
Those days I feel were the hardest. Dad was very very upset, as he took the brunt of her mood swings and aggression.
I myself as a woman was often attacked verbally and physically to the extent I was afraid to visit my own home such were her abusive outbursts and bizarre emotions.
Sometimes she would cry for no reason. The sight of an ambulance or a police car would cause her to cry uncontrollably. Family holidays were a nightmare. She would attack us, then wander off, threatening suicide and making strange accusations. She seemed to have totally lost touch with reality.she lost her ability to care for her personal hygiene. Soon I had to wash her, bathe her and toilet her, along with my dad and brothers too. I remember she would refuse to get out of the bath…I had to call my brother even in the middle of the night to help us lift her out.
It was hard as she was losing her dignity.
She began to lose her co-ordination. Her driving was very dangerous, and thankfully this soon stopped. She lost her Job…She was working as a manager In a hospital day Care Centre for the elderly.
It was when she started mixing up the bloods that the Staff began to notice things were odd and began to worry. Sometimes she would lie down in the hospital beds and feign illness…
I remember my Mum as being very active, lively and articulate. She was a very caring woman. She worked very hard as a mother and eventually as a nurse. She was sent away from home (south of Ireland) at the tender age of 14. Her mother in Donegal had 7 kids and she simply couldn’t afford to send my mum to highschool. She was sent to the North, to look after a great Aunt who was ill and lived with her Dad’s sister. My Mum was very homesick.
She had a close family and grew up on a small, rural farm. They had very little money. Mum told us that she went to school on a donkey. They had no stove even… the fire was still open on the ground and each day they carried a potato from the fire embers to the school along with some milk. Their bedroom had two beds. The girls (4 of them) slept on one, the 3 boys slept on the other. That was how it was.
happier days...
My brother & I on the hill above my Mum's home in southern Ireland.
My brother & I on the hill above my Mum's home in southern Ireland.
So, after the old Aunt passed away, My mum did training to become a nurse. Shortly after this she went to bible college,
met my dad and they married soon after. She became a minister’s wife with all the pressures that entails.
Mum didn’t work when I was young apart from her work in the community with women and the church. But once my Dad took ill with his heart, she went back to work as a nurse fulltime, quickly being promoted to a Sister in Charge/manager.
As I have said the early stages of the illness were the worst.
In public places she was disorientated. She would lose her balance. Co-ordination was difficult. She became increasingly anxious, often vomiting unexpectedly with this anxiety. This was very traumatic for me particularly as it seemed so violent and she simply couldn’t seem to tell us that she was going to be sick. Around this time Yasmin and Sasha were tiny babies. I wasn’t working and so was able to support my Dad emotionally and practically quite a lot, but it was very traumatic for us all.
There were many tears of frustration, grief and loss.
She ate obsessively; to the point that she became so overweight that she became diabetic. Before she had always been in good shape and was slim. Sometimes she would get lost. We were always on edge in shops with her. She would buy things irrationally that had little value. Silly things like teddy bears and toys for herself. Other times she would buy extremely expensive things. Once she bought a diamond ring worth £1500. In clothes shops she would try on clothes, sometimes over the top of her own things and the refuse to take them off… often we’d end up manoeuvring her over to the counter to swipe the things with her still wearing them. It was so embarrassing, especially to my dad. Mum had once been so independent. She became incontinent. We were always making sure she was toileted as you would a small child. But when we took her to the toilet sometimes she’d lock herself in and refuse to come out. It was so stressful. I’d find it particularly hard as I also had to keep an eye on my young children. Sometimes Sasha (a toddler) would be running in one direction, Mum in another and Yasmin somewhere else!!
Even when in the car it was nerve wrecking… she would tamper with the steering when you drove, or the gears and even the brakes.
Once I had stopped the car on my drive (which is on a slope).
I was in the boot getting things out. She lifted the handbrake and the car careered towards the garage.. ..with my kids in it!!
I had to pull with all my strength on the boot, whilst luckily my dad was able to put on the brakes…
She did this again one day whilst he left her unattended to run in to a shop to get a paper… the car slid into three other cars causing quite abit of damage. Mum simply laughed!
Each lurch in Mum’s recession into the dark void of dementia brought a new hurdle, new pain and separation for the family. She became totally dependent on us for her hygiene, and welfare. She was unable to dress herself. She couldn’t be trusted to “hold” my children without dropping them. She couldn’t be left alone. Nevertheless she LOVEs my children. I am so glad that I have been blessed with them as they have brought so much joy and happiness to this terrible existence. Mum thankfully doesn’t know of her illness. Even when she was diagnosed, the psychiatrist told her she had brain atrophy, she came back and told me and simply laughed. So much so had her cognition disappeared. Its now at least 10 years since her diagnosis. Mum is content.
She has forgotten how to walk. It’s about three years since she spoke. She has been fed for over four years. Her muscles have completely tightened and she is in catatonia.
She can’t unclench her fist. She wears bandages to stop her nails making her palms bleed and become infected. She can’t communicate if she is in pain. In fact she can’t communicate at all. She is emotionless. She doesn’t feel sad, happy or hurt. She simply is.
The hardest things for all of us as a family is the guilt. The guilt of not realising that when Mum was hurting us that she had an illness, the guilt of perhaps not stimulating her enough to try and delay the illness, the guilt of not being there enough, and not supporting my Dad enough. The guilt of never feeling we are adequate. This haunts us all everyday.
Mum is still at home for this reason. She has afew weeks respite once in a nursing home – this resulted in her developing blood clots in her legs and lungs. It was horrifying to watch. She was in hospital for 6 weeks on Oxygen and literally hours before she almost died she was diagnosed with these things and placed on warfarin. Dad never recovered as he felt responsible for letting her go into the home. “They” hadn’t walked her enough and as a result she developed the clots. So he is determined to care for her as long as he can, despite being unable to have a life of his own.
Each step of the illness has been a grieving process… every year we lose a little bit more.
Today Mum gets most satisfaction from her hair being combed, her hand being massaged, her face being stroked, or the playful smiles of her grandchildren.
On her birthday last week, she was able to try and blow out the candles. It seems though she can’t speak she can still understand a little. She knew that the candles were there for blowing.
She still can smile. It’s a little twisted as her muscles are so tight, but we know she smiles….This means so much to us.
Even stranger she can still remember to kiss …
When I lean my cheek to her, she bends over to kiss me. This is about ALL she can do, but it shows that love is still there…
She has so little primitive function left and yet LOVE and affection still seems to exist.
It means so much to me that although she is now almost a total stranger and she has died many deaths on this long and cruel road she somehow still loves. I am still her little girl… and she can still kiss me goodnight.
We sometimes would take Mum for little walks in her wheel chair around this promenade~ She was in a care home in this town too for a while.
Picture By Calaghan
