Watching the Loss of My Mom to Alzheimer's Disease
How did you first feel when your mother told you that she had Alzheimer's/Dementia?
My mum did not tell me. I told her that I thought she had a memory problem and I thought she needed to see a doctor about it as if it did turn out to be Alzheimer's, the quicker she got on medication, the better her outcome. Unfortunately it took her 2 years before she finally went to the doctors with the problem and that delayed everything!
This disease takes away a lot. What do you miss the most about your mom?
Being able to have any sort of meaningful conversations with my mum is what I miss the most. I long for the times we were able to have our mother daughter chats. I also miss our nice long walks down by the river as now her gait is shuffled. I can put her in a wheelchair and push but this does my back in, therefore we do not go very far.
What sacrifices have you made to make sure that your mom has the best possible care?
My own health. I am an only child, have no family near to help, dad died over 4 years ago and I promised him that I would look after mum and I intend to keep that promise no matter how hard it gets. Although, mum did go into a nursing home 10 months ago under continuing health care as mum also has a very rare cancer. The GP at the nursing home has totally changed her medication and her HB levels have gone from 60, her normal transfusion point, up to 133. Greater than mine! Having some oxygen getting to her brain has indeed given her a bit more of a thought capacity so we are again back to being able to communicate a bit, to the point I am now working on having her come back home for the last part of her life.
This is being delayed a little as Easter I developed a kidney stone. The hospital have fitted me with a stent for the time being and it is causing me all sorts of problems while I wait for the stone to be shattered by a laser. It looks as if I will have to wait until August for this to happen, in the meantime mum has to stay where she is as I am just not well enough to look after her. I find this crazy as the NHS are spending over £1,000 per week on her bed at the nursing home. So you would think it would be in their interest to sort me out quickly so that I can save them thousands, but no, as one department seems reluctant to speak to another! Mum, meanwhile, can't understand why she can't come home yet or, should I say, she cant remember the reason that I keep telling her. It is becoming very distressing for us both. Mum is so sad every time I leave her after a visit. She cries and says she wants to come home. I keep telling her it will happen as soon as I am fixed. When mum eventually gets home, I will have to get a carer to do the night shift for me as mum is a poor sleeper and a wanderer.
Do you have any pieces of advice for new caregivers with a mom who has Alzheimer's?
Oh, so many tips on how to help! In the early stages, label cupboards as to what is inside the kitchen and the bedroom so that the patient can find things easily. Make the labels quite big as their eyesight starts to deteriorate. Put a big sign on the toilet so, while still able, they can locate it. Keep them involved in pastimes and hobbies as much as possible. Do not be ashamed of their condition, tell people so they can help, promote education and tolerance, it is the only way forward. Keep your sense of humour, you are going to need it! If your area holds courses for people who have any kind of dementia, get on that course, get the person with dementia on that course, it will help them as well. They will make new friends who have the same problems and will help them through the experience. We belong to a dominoes group who, after attending one of these courses and had made new friends, still wanted to meet up, so we approached the local church that has a café attached and asked if we could meet up there once a week and play. The church was most accommodating and does not even charge us a penny for the use of the premises that those of us that can play on their own do so and those of us that need help pair up. It is all done with fun in mind, none of us take it seriously.
We have found it seems to help with number recognition as the disease progresses. Find a singing for the mind group, even if you think you can't sing. It DOES NOT MATTER! It is also done for fun and songs help memories as do smells and old photographs. Include your person in as many things as you can so they do not feel like an outsider. Laughter is the best medicine. Try to think one step ahead. You will probably have to convert your bathroom as the condition progresses if your loved one lives at home. They may also need to start to use some sort of walking device, it may help if you do the same, play along with it and keep up the joke.
A BIG calendar may help. Make it together and cross off each day as it ends so they can easily see what is on the cards for the next day. Food will start to become a problem eventually, eg my mum is on soft foods only now and I know she will progress onto liquidised foods. Forewarned is forearmed so do not stick your head in the sand. This horrible condition will progress. Yes, at different rates of time, but it will progress so be honest with yourself, face it and try to live every minute of happiness with your loved one as you can. At the end, they are STILL THERE even if they are hidden.
