The Stages of Alzheimers
Alzheimers - What to expect
Having seen the devastating effects of Alzheimer’s first hand and not having access to relevant information, because after all it was never going to concern me?? I wanted to write a short journal of the behaviors displayed by my mum. I am hoping that it will help somehow to know what to expect rather than trying to fit the behaviors into a generic description of the different phases of the illness. I hope this helps.
When I found out my mum had Alzheimer’s I searched on line for information about the type of behaviours that she was displaying. I found genetic descriptions and I tried to fit her behaviour around those written down in front of me. I began to doubt that her diagnosis was real and fooled myself into a false sense of security because she was not like that.
I then decided to look on You Tube to see if there was anyone that was doing the same as my mum. There were a few very sad videos put up by relatives to show the ravages of the illness, but nothing really matched my mum’s behaviours.
If I had of seen something that was akin I would have felt comforted, there would have been a feeling of normality about the abnormality of the situation I found myself having to deal with.
Here are some of the features of her behaviour. I would like to point out I am not medically trained and the stages I describe are what they are to me.
Early Stages of Alzheimers 1 -2 years
She became very dependent on me, almost clingy but angry. She would have outbursts about nothing. If I was on the computer she would stand over me and shout angrily about me not spending time with her. There was a breakdown of the social boundaries between us both. I did not know she was ill at this time and would react by leaving her and going to my room for fear of becoming involved in a huge pointless argument.
She would attack me verbally. One time I walked in the front door from work and she shouted ‘You Bitch’ constantly at me. I was upset, aghast and she could give no reason for her outburst, she ran upstairs and went to her room. Yes she was living with me by now. I still did not realise something was wrong.
She has no concept of money or paying bills, she would hoard her bank books and any money I got out the bank for her inside her clothes then lose the money, sometimes large amounts because this was what she asked me to get her. No I still did not think anything was wrong expected old age. She was 75 at the time.
She offered to make me cups of tea and then would put sugar in them. I said you know I don’t take sugar, why did you put it in the tea. She would reply,’ Don’t you oh sorry I forgot’. She tried to make some Cornish pasties and put raw meat in side raw pastry, forgot to cook them and gave them to me for my supper. We laughed, it was amusing but I still did not know she was ill.
She started to wash less and less, and if I commented she would say ‘oh I am clean do you think I’m dirty I flannel wash every day’. She told me she was frightened of water so would not shower. I still did not think anything was really wrong.
If we had family round for dinner she would just sit on her own on the stairs, or in a corner and not interact with anyone. It made anything we tried to do very uncomfortable it was like having an elephant in the room. People stopped coming to the house. It was like she drained the life out of everything.
This lasted nearly two years, erratic odd behaviour, but nothing you could really put down to a mental illness.
Late Early Stages - 12 months
LATE EARLY STAGES
We ordered a new sofa and it came and she had an outburst asking me what right I had to buy a new sofa without her say so. It was my house, my sofa and my money. She had no concept of the fact she was not living in her own home. She threw herself about, crying, staring at the wall and stating that her she was talking to her parents, who had been dead 60 years.
This behaviour was over a two year period and confusing to say the least. It is easy to convince myself she was just having a ‘wobble’ after all we had lost my dad and she had been married at 18 and never been on her own.
She would over react to children if we were out, going over to them, leaning over their push chairs, trying to talk to them. Most parents where ok, but I could sense, they were uncomfortable with it. I said one day ‘come on mum let them get on with their shopping’ She stopped in her tracks and shouted at the top of her voice ‘You are horrible, so mean and nasty I am just being kind not like you’. I was mortified but let it go; I still did not know she was ill.
The sofa incident spurred me on to get her to the Doctors. She had the tests and the nurse told me she was deaf and suffering from grief, to come back in a year and she would repeat the test.
I was upset and beginning to worry that this was just her and this was normal and I was reading too much into the situations, overreacting maybe. So life carried on. She was still popping to the shops to get bread and milk, she still talked on the phone to her sister, and she still did some housework.
The food in the fridge needed to be gone through with a fine toothcomb, some of the stuff in food cupboards where over three years old. Eggs, a year out of date. I threw them in the bin, the next day they were back in the fridge. She was going through the bin retrieving the food. I am surprised she did not kill us. She didn’t but it was a fight to get her to let the stuff go in the bin. We had to hide the bin.
MIDDLE STAGES – ABOUT 12 months
She walked around all night, one time she woke me to invite me to her party. It was 3 am in the morning and she had put empty plates, cups, knives and forks all over the dining table in no particular order and had the dog sitting on a dining chair. I was shocked and said ‘What the hell are you doing’. She said ‘Come on I’m having a party, me and the dog have had a wonderful conversation and the children are loving it’. I was shocked to say the least but to her it was real. I got her back to bed, under duress, she saw me as the monster ruining her party.
This was the start of many hallucinations, usually in the middle of the night, men in black standing in corners, babies crying outside, her trying to get out of the upstairs windows to save them. It was getting really serious now and I was getting little sleep. It was also terrifying, she had lost a lot of weight, looked hideous, her teeth where just falling out, she was not eating, and would try and get into bed with me and my husband, she would stare at nothing, lunge at you if you where sitting down. We hid the knives, we put the kitchen equipment away every night, we hid anything that was poisonous like washing up liquid, bleach.
I started to go onto online forums, CARING.COM and read what other people where putting up with but nothing seemed to be like my mum’s behavior. CARING.COM by the way is a fantastic site and has really helped me so I would recommend this to anyone who is trying to deal with this Alzheimer’s.
A year had gone by and another Doctors appointment. This time I got some sort of recognition to the fact something was really wrong. A referral was made to the hospital for her to have a CAT scan of her brain, in six week time.
Life carried on and the bizarre behavior did as well. Me and my husband would sit in the bedroom for some peace and laugh about some of the things she did. I know that sound cruel and uncaring but it was a release and some of the stuff she did was very amusing. One day she came downstairs with every bit of her clothing on, she looked like a barrel, and she was going shopping. We appeased her put her in the car drove her round the block and came home again.
She would pinch our clothes and put them on; a motor bike helmet on a 76 year old woman was very funny, especially as she was wearing her floral dressing gown. She would try to make a cup of tea and bring us cold water and milk in jugs, vases or even saucepans. We became very adept at making her behavior normal, but still we did laugh sometimes, we had to.
Although we tried to make light of the situation, it was having a fairly devastating effect on our marriage, we could not go out, have a holiday, or really even leave her for long. I was still working full time as was my husband. We had a serious discussion about what do to and thought about a care home. We put this to her oh my goodness you would have thought we were going to kill her. Looking back now her reaction was over the top, but we were actually a bit scared of her and if she was calm we could cope. We backed right off and decided that I would give up work and be her main carer.
I gave up work in 2011 and sat in that house for hour after hour with a sick woman. It was the hardest year of my life.
LATE STAGES – ALZHEIMERs –STILL ONGOING
It was not long before the incontinence started. I went upstairs to her room and she had sat on a chair and urinated all over the floor. The room stunk so we had to get rid of the carpets, and put down a laminate floor. She would defecate into her hands and try to wipe it with toilet paper; it would end up all over the walls, over her and mostly over me. I would get a scarf smother it with perfume and wrap it around my nose and mouth. I could not stop retching but who else was going to clean this mess up. She would not get into the shower. I had steps, rubber mats, seats everything but she would not get into it so I had to fight with her to clean her. I would do it all and then she would urinate again whilst I was trying to put her incontinence pad on her. I phoned for help, Doctors, caring organisation; I even went to carers fair, registered with every one there and never heard a peep out of any one. I was alone...
I managed to pay, using her money, for carers to come in three times a week to give her a bed bath. I would wait excitedly for their arrival so as I had someone normal to speak to, I would make cups of tea and burble on about anything or anyone just to get a bit of normal conversation.
By now she was sleeping much more and although the incontinence was hard she did sleep. She had had her scan and her diagnosis of Alzheimer’s had been made. I knew it was coming and it gave me some comfort but coupled with a huge amount of sadness.
The next six months were spent with me feeding her, making sure she was comfortable and giving her medication, which was not a lot. She had been prescribed a common medication given to Alzheimer’s patients which I believe made her sleep like a log day in day out.
I painted knitted, watched film after film, made cakes, anything to stop the tedium. I had children I never saw, grandkids I never saw, no visitors ever came to the house and I was so lonely. Mum just slept.
I was still expected to get this frail mad old lady to the Doctors, opticians, chiropodist, but it was impossible. We changed our car to an upright people carrier so as we could transport her. It came to a point where I said no more, if she needs to be seen they have to come to the house to see her.
She had another Doctors appointment, another 12 months had gone, and she was taken off the medication, I was told she was now entering the late stage Alzheimer’s and she could not be left alone again. I reduced the tables over a month and then she came back to life. She was fretting, walking and walking, trying to climb over banisters, still incontinent, taking off her pads, falling over, up all night every night 14 hours at a time. She fell four times in one day; in the end I called an ambulance. She looked like she had been hit by a car; she had fallen flat on her face. Urinary tract infections became the norm as did visits to casualty every few days. I was lifting and pulling her and carrying her and well really not coping at all. I could not keep up with the washing, the house stunk of urine.
They sent her home telling me she was having mini strokes and that the brain scan showed hundreds had occurred. So what did that mean, nothing, really, just thought they would let me
know. I rang the Doctor and asked for something to sedate her, she was like a hamster on a treadmill and in danger of really hurting herself.
The doctor gave me some tranquiliser stuff which I gave to her, this resulted in her falling again, badly and another ambulance being called. It was like there was something wired in her brain that could not let her rest, stop walking, or climbing and she carried on trying to do it whilst sedated.
I was waiting in casualty to be seen and a flame haired Scottish Doctor marched over to me. He said ‘Who is looking after this woman’. I put my hand up, what I was doing, I felt like a naughty school girl. He was about 28 years old. He asked me who else helped me and I told him no one did, he asked me how old I was, I told him. He looked around the casualty department and asked me to put an average age on the staff. I said about 30, he said exactly you are too old to be doing this on your own; you are not young enough of fit enough she needs to be in a home. Mum was talking on an imaginary phone, she was oblivious to what was going on.
Mum was now diagnosed in delirium. I never knew what that even meant, I do now. I thought she had been bad before this was like nothing I had seen. It was at this point that she lost the ability to communicate and became lost on her own world. She could still talk but absolutely nothing made any sense. She was trapped in a make believe world talking nonsense to no one.
I took her home after a couple of days and tried to cope with her and the delirium. She fell again, badly, ambulance called and another stay in hospital. Home again ill again, Doctor called she said ‘This woman is dying, her blood pressure is low, she is suffering from malnutrition, dehydration get an ambulance straight away’. That was the last time my mum ever set foot in her house again. This was exactly 12 months ago this month
She was put back together in hospital, antibiotics via a drip, rehydrated via a drip and given liquid food. She never stopped walking, crying, climbing and ended up in the laundry pile, in the bins, with 20 dressing gowns, sixteen wash bags, 30 slippers and another fall. The nursing staff were at their wits end but tried and kept on trying with her.
I was advised that it would be almost impossible for me to look after her and that she needed specialist care. I went and visited a few care homes, and decided on one two minutes from her front door and me.
The guilt I feel is unbearable, especially when she asks me day after day ‘take me home’ apparently she does not know what home is, it’s something common to Alzheimer’s patients.
I am back at work now, full time, life goes on, see the grand kids, my kids, could have a holiday, can go for dinner, days out. It’s hard but the decision should have been made a long time before it was. I thought I could do it, look after my mum like she looked after me. I had to admit defeat. There is no happy ending..
I took her a mother’s day card, flowers and chocolates, she didn’t know me.
I hope if you are reading this your journey is easier than ours has been. I would advise not to wait to long before you make the dreaded decisions that have to be made. Not all Alzheimer’s patients behave the same way, some are violent, thankfully my mum isn’t. The care home staff love her because she is sweet natured and cuddles them. She has no idea who I am when I walk in the room and she will burble something out and then say my name, then ask me how is my mother, then she glazes over and goes into a trance like state. Time for me to go, she had gone for a while. I have now reached a new normal in my life for now...
Not there yet....this is the cruelest illness, you just don’t know how long it will go on. I wish my mum to die and be at peace, then I hate myself for thinking that. I am getting ready for it and read about what to expect. I know I will feel a great sense of relief and then the guilt of that feeling. I am preparing, I know I will cope because I will be helped by my family and the nursing staff. I have requested no intrusive treatments and no resuscitation. Everyone is different and has different coping mechanisms for dealing with grief and loss.
I have read so much about it and although it is hard at first I would really recommend that if you are coping with this illness that you prepare yourself as much as possible. Find out about the drugs, find out all the legalities, think about the cost of the funeral. Prepare for your life after Alzheimer’s because it takes every waking thought, all of your energies and there will be a void.
I hope this has been helpful to whoever reads it.