It's well known that Dementia is a terrible disease. Not only does it steal the personality of the afflicted, slowly and painfully, but it also breaks the hearts of those caring for their loved one.
What makes it even harder to deal with, is that each person suffers in their own unique way. No two people will display the same symptoms.
I discovered this personally when both of my grandparents were diagnosed with vascular dementia.
I lived with my grandparents from a baby to the age of around 14. I had a wonderful childhood. They both provided for both myself and my brother with a loving and safe environment. My grandad taught me about life, and I quote him every day. My nan loved me more than life itself. I adored them both equally.
Diagnosis
Grandad was first. He had been forgetful, missing words of a sentence and getting rather frustrated. We lived 250 miles apart and I only got to see him a few times a year. This, however, made the difference in him more noticeable to me.
He had gone through the tests at his local hospital and was diagnosed with vascular dementia. He also had other ailments such as Angina, Arthritis, and Osteoporosis. When I got the phone call to say the doctors had confirmed dementia, I shrugged it off. It was no big deal. I had absolutely no idea what was to come, or that it was in fact, a death sentence.
When everything changed
Because we lived so far apart, I used to speak with my nan every Sunday morning at 11 am. We never missed a call. I rarely spoke to my grandad on the phone, he wasn't one for a chat. Nana would always fill me in on the goings-on of the previous week and discuss what was going on in my life. I would always hang up feeling guilty that I didn't see enough of them and make a promise to myself that I would make more of an effort to visit.
Grandad was very much the epitome of the stiff upper lip. He was a brave and proud man. A former Royal Marine and had always been what he would call a grafter. He rarely showed emotion and believed that tears solved nothing.
One Sunday morning, the phone didn't ring. I gave it half-hour and still nothing, so I called my nan. No answer. This was very unusual but I didn't think much of it and just tried to call again later in the day. Still no answer. This went on for several days and I began to get increasingly worried. They never went out. I called BT and asked them to check the line and they reported that everything was in working order.
Finally, I got a text message from my nan. She said she would phone in five minutes and I sat next to the phone watching the minutes pass. Finally, I got to speak to her. She was whispering and said that Grandad was getting angry if she wasn't next to him at all times. She insisted that everything was absolutely fine, as she always did. I was not convinced.
The following weekend my husband and I drove to Yorkshire to spend the weekend with them.
Never I have ever felt uncomfortable with my Grandad. He was my hero. He made everything better. What I soon discovered, was that my Grandad had gone. In his place was a very angry and insecure man. He had no idea who we were and could not understand why we were sat in his house and eating the food that he had worked so hard to buy.
He hated my nan talking to me and anytime she tried to have a conversation that was to anyone else but him, he would bang and slam around. I could see that we were just upsetting him and decided for my Nans' sake, to leave. I was worried sick for my nan but there was nothing I could do.
Within days of arriving home, my nan called me. She was distraught. Grandad would get up in the night and wander around the house generally not knowing where he was. Nan, as always would do her best to care for him but on this particular night, he took it a step too far.
Grandad was convinced that someone was going to kill him and take Nana away from him. In order to save them both, he needed to get Nana through a secret door in the wall. Grandad was over six feet and Nana four feet and a fag paper. Of course, there was no secret door so as Nana refused to go, he grabbed her and tried to force her through. Needless to say, Nana versus a wall was never going to end well.
Somehow she managed to get away from him. She locked him in the house and ran to her sisters in her dressing gown, who lived around a mile away. Nana stayed with her sister overnight leaving Grandad on his own, at home.
Luckily, I think this actually saved my nan. Her sister called Social Services the next morning and without hesitation, they stepped in to help. They assessed him and Grandad was sectioned under the Mental Health Act (1983). He was removed from the house and taken to a secure unit at Dewsbury hospital.
Like a punch in the chest
I had been to visit Grandad several times while he was in the hospital. He would still have moments of lucidity but they became less and less. He would often frighten me, he was a big man and when he wanted out there was little you could do to stand in his way.
From time to time he would sit in his chair and cry like a baby. The doctors thought that in these moments he was aware of his situation. What they didn't understand is this was so far removed from who my grandad was. When he sat and cried, he didn't have a clue.
However, when he sat and looked you in the eye and delivered a piece of vital information on how to improve your life, that was when I knew my grandad was still in there somewhere. The last time he ever did this has stayed with me every day since. It was like being punched in the chest and I feel that pain every time I think about it.
His words of wisdom were this:
"I have worked all my life, I paid my bills, I paid off the mortgage, I raised both you and your brother, I never got in trouble, I saved money and didn't splash out on things I didn't need. After all that I still ended up here and I know I will never get out. I will never go home. DO NOT make the same mistakes as me sweetheart"
I know right... OUCH!
Finding a home
While Grandad was in the hospital, he deteriorated. Social Services felt that we needed to find him a care home as soon as possible. They provided me with a list of places that had availability and who would take him. You would think that he could have his pick, but this isn't the case. He needed a home that could provide a secure EMI (Elderly Mentally Infirm) Unit and that would accept him after they made their own assessment based on whether they could meet his needs.
Nana was in complete denial. She believed that he would get better and come home to her. I would get very frustrated with her when trying to explain what was going to happen. Something I am not proud of. I had already cried a river, knowing that Grandad was gone. I had accepted his fate. My nan had not.
We inspected several homes, each one unsuitable and each one getting further and further away from Nana. They either had things hung on the wall that Grandad would use as a weapon, a loft that was unattended and looked more like a prison or an hour's drive for Nana who was determined to see him every day. Finally, a place came up just down the road and it was perfect. Nan was visiting Grandad in the hospital when I went to look at it, but I accepted the place straight away as I knew it was right for both of them.
Visiting became too painful
Nana continued to visit grandad every day, without fail. No matter what she always went to see him. She needed to still look after him so she would do all his washing and bake him cakes. This was as important to Nana as it was to Grandad. Most of the time he didn't know who she was but he did know that he trusted her. Nana needed to keep herself busy. To feel like she still had a husband.
He had gone back to his younger years. He believed the care home was his barracks and that he was in charge. He would get upset that his mum wouldn't visit and even though she died of cancer when he was in his 30's, he still believed she was very much alive.
I admired my nan so much. It must have been so painful to hear him ask who she was. All those years of marriage and she was erased from his memory. I don't know how she did it.
He had stopped talking and the only way in which he could communicate was to sing random words. I was always amazed at how quickly he could think of the words that fell from his lips. They made no sense to anyone but him.
I couldn't cope with it and I stopped going to see him. He was living in a time before I existed. The pain was just too much to carry and I chose instead, to stick my head in the sand. A decision I have never regretted.
On one of our visits to Yorkshire, we had dropped Nana off at the home and agreed to wait outside in the car park for her. He must have been in a good mood as she was in with him for a good couple of hours. It would also explain why, when she was leaving, she decided to bring him outside to see me.
At the front of the home was a ramp for wheelchair access and a set of about 15 concrete steps. When they came out of the front door, Nana and a carer started to walk down the ramp and grandad double backed and headed for the steps. From a distance, I could see that he was about to make a run for it, now that he had forgotten that he was arthritic. I jumped out of the car and ran over to him and managed to get to the top of the steps before he could make his way down. I heard my nan say "look, Frank, it's Shelley" just before he told me to fuck off and then pushed me backward down the steps.
That was the last time I ever saw my Grandad awake.
Grandad suffered a Stroke
Because I had sorted out where Grandad would live, my name was on the contact details of his paperwork, even though his daughters, my mum, and aunty would call and visit him regularly. Sadly, the home where he was living had closed down and he was forced to move. By this time he had been in care for the last 2 years.
It was a Sunday morning at around 11 ish when my phone rang. I picked it up expecting it to be Nana but it wasn't. A voice on the other end informed me that Grandad had suffered a stroke that morning and had been taken to hospital. I took the details of the hospital and passed them on to the family.
My next call was to my nan. I knew she would be going to visit him so I needed to let her know not to go, or to go to the hospital instead.
When Nan answered the phone, I couldn't understand what she was saying. Her speech was slurred. I had called her to tell her that Grandad had suffered a stroke, to discover that so had my nan.
Grandads Dementia
The way in which my grandad had changed was immense. All he ever wanted to do was get out of wherever he was. He was violent. He never sat still, always on the move. He would destroy things to the point that furniture had to be removed from his room. He would wet the bed. He would sing at everything and then cry for people that he never liked. He forgot everyone. He forgot his life. Everything that made him who he was, vanished and was replaced with a complete stranger. Even the look in his eye changed.
When I think back to before he was diagnosed, I realised that he had shown signs of dementia years before. At the time I paid no attention to it. When he was diagnosed, I paid no attention to it. I am now very much aware of the heartbreaking effects. I can now look back and pinpoint the time when he progressed to the next stage of his disease.
If you are currently living through this ordeal, I have posted some links below that may be able to offer you some help and support. If you have any questions then please feel free to either leave a comment at the bottom of this post or drop me an email through my contact page.
Next time I will go into detail about Nana. The differences between them both and how I coped with living with Nana on a day to day basis. I will update this post when I publish Nana's story.
Definition of Mental Health Act (1983)
The Mental Health Act (1983) is the main piece of legislation that covers the assessment, treatment, and rights of people with a mental health disorder. People detained under the Mental Health Act need urgent treatment for a mental health disorder and are at risk of harm to themselves or others.
The stages of Dementia - 3-stage and 7-stage.
Kindly Care gives a really good description of the stages of Dementia and Alzheimer's - if you want to read it then please CLICK HERE
Support available:
Dementia UK
https://www.alzheimers.org.uk/find-support-near-you
Find services in your area:
CLICK HERE to go to the NHS website to search for Adult Services in your area
Find a Care Home that provides for Dementia and Alzheimers
Visit the Care Quality Commission to see the latest reports on your chosen care home
Featured Photo by Matthew Bennett on Unsplash
More info: sheldan.co.uk
My brother, Grandad and me.
