I am writing this with a heavy heart after a long, slow decline in our loved ones. Mrs C is now in a dementia unit and Mr C will be heading for a care home soon. The family have tried everything to keep them at home but eventually one has to admit that the progress of the disease is making it unsafe for the person to remain at home. Paranoia, ramblings, disorientation, confusion and anxiety have all increased considerably.
If you are brand new to this journey your first port of call is your doctor for a diagnosis. This will help immensely with care packages and the correct, early treatment of a loved one. Next is usually a referral to a memory clinic and if required a social worker may be assigned to the person. CT scans or neuro imaging are also used to identify what sort of memory loss your loved one is suffering from. Alzheimer’s Disease is the most common cause of Dementia. Lewy body dementia, vascular dementia, Fronto temporal dementia… it is best to get a correct diagnosis.
Please do not be afraid of involving Social work. Sarah, our point of contact is amazing. Full of useful advice and insider knowledge of the care system, which is completely alien to us. She has also been very helpful in wanting to keep our loved ones at home for as long as possible. Mobility tools, benefit awareness, support groups, local musical memory classes, information leaflets, all good to know.
My Recommendations: Firstly talking about money and Power of Attorney can be an extremely difficult conversation but I am afraid it is one that we should have started much earlier. The paperwork and new banking rules make this process weeks/months long and not an event that is going to happen soon.
Why do you need Power of Attorney? Simply the person may lack mental capacity to make decisions about their finances, health and welfare. There is still no cure and the disease is usually progressive.
Why Medical Power of Attorney: if they are forgetful about collecting medicine, taking medicine, which medicine, when, they may keep asking for repeat prescriptions as they have “lost” their medicine.
Fortunately for us in a small town, the local Pharmacist flagged up concerns quite quickly and we were suddenly made aware of boxes and boxes of medicine hidden at the back of drawers, dropped under chairs and stuffed in bathroom cabinets.
If you do not have medical power of attorney, discussing these things with professionals can be difficult as nowadays, everything is “confidential”.
If you have Power of Attorney while the person still has mental capacity then it will make your life so much easier further down the road.
Financial Power of Attorney allows you access to their bank accounts. This is helpful as you may have to cancel standing orders, over inflated policies or car insurance if they give up their driving license. (Mr C had boiler cover with 3 separate companies.)
It also allows you to simply monitor their cash flow. Mr C loved chatting to the telesales lady and regularly ordered cases of red wine at £200 case which he then gave away to visitors…or withdrew hundreds of pounds from the cash line and regularly over paid window cleaners, domestic help, taxi drivers.
We were lucky that many people were honest and informed us of what was happening. There will be plenty of indicators as to what is happening to the person mental state so stay in touch with neighbours and make them aware of the situation. We have been blessed with wonderful neighbours, popping in to see Mr C and notifying us of problems. Eg. banging doors at night, wandering lost and confused, unsuitably dressed. I won’t wear you down with the details……everyone journey is different.
Help is at hand and I have listed some of the websites and helplines below. Please call them if you need advice. Providing a safe home for the elderly or dementia person is your priority. These are my favourite aids below.
- A digital clock with large illuminated face describing day, time, month and year. The reason this was a brilliant buy is that even if they accidentally switch it off or hide it, once plugged back into the wall, it resets itself to the correct time of day.
You may think,”oh, my mum can see the date on the newspaper” but often there will be a jumbled pile on the floor. The TV becomes obsolete as they may forget how to use the TV remote and sky box, so the TV for telling the day or time, is no longer an option. We also had to mount the TV on the wall because of stumbling elderly people. The modern TV are so thin and lightweight, they can be easily toppled, scratched and broken as we have discovered.
People with poor vision and those struggling after a stroke where the ability to look down is impaired, may benefit from a projection alarm clock. This clock has a small projection screen which illuminates the time onto the ceiling. There are several brands to choose from and include: Ecwin, Mpow and Mesqool Alarm Clock. They retails from around £22 upwards.
2. Rails – elderly relatives may qualify for a personal allowance grant to adapt their home and this will help pay for handrails in entering house, up the stairs and shower rooms/ bathrooms etc. Your social worker will advise you.
3. Keysafe outside home. This becomes a priority if the elderly person is hard of hearing or simply cannot get to the door easily. A key safe allows carers to enter and family/neighbours access in emergency situations. (An incident last week prompted us to remove all interior locks after a bathroom incident which involved care workers their manager and a police car).
4. Medicine boxes: I really found the pop up medicine boxes with the days on it really helpful. The one below has the press release button easier for people with arthritic fingers. You can also buy pill boxes that have alarms, flashing lights and vibrations to prompt the person.
Mr C could not open the Dosette round boxes and would often resort to a knife which would invariably spill the pills over the floor. We did eventually get to the stage where all medicine had to be kept in a locked box until we, or the carer came to sort out the weeks medicine.
5. Door sensors – We have not gone down this route yet, but many of my friends benefitted from fixing sensors on the doors. This was to alert them of wandering parents in the night and also over frequent use of the toilet. My friends elderly mother had visited the toilet 9 times in the night, as shown by the sensor, and this indicated to my friend that her parent possibly had a UTI. (Urinary tract infection). A quick visit to the doctor confirmed and resolved this issue.
6. Money and jewellery going missing.. this is a very tricky one. Often the elderly person has hidden their jewellery and sometimes bury it. It is often claimed by them, that someone has stolen it and with memory loss and so many people coming and going it is difficult to know what is going on.
We did encounter a situation with expensive make up, perfume and nail varnish disappearing. We did not set up cameras and would like to think that Mrs C hid them.
We have no proof of anything and yes, a camera would have helped, but we felt it was too much of an invasion of their privacy.
What I would recommend, is that you itemise all the expensive jewellery, cufflinks, medals etc, take photo and remove to another location, safe or secure place. If they are going missing involve the police and show them what each piece looked like, this will help in the event of stolen goods and their recovery.
7. Personal alarm. This invaluable equipment is connected to a central emergency line that offers a rapid response to an elderly person. It also offers peace of mind to the elderly person if they have lost confidence walking outdoors alone, and it gives the carers peace of mind if they need to pop out. This is available through social services but there is a monthly call centre fee and the elderly relative needs to press the button.
Another clever alarm is the Fall detector, this uses an inbuilt motion sensor to send an alert to a loved one if the elderly person collapses or falls, without the need to press any alarm buttons. I believe that this may be available via NHS but again a fee will be in place for call centre. Check with your individual local authority.
8. Grabber – not entirely sure what the correct name of this is but after several bad falls, we found that one of these allowed Mr C to pick up things when it was too uncomfortable to bend down and toppling over was an issue. Available online from many suppliers, check that it is easy to squeeze the handle part as again some of them can be quite stiff for an older person who lacks strength. Read the reviews on places like Amazon.
9. A tray with small attached beanbag underneath is very useful at meal times. Frail elderly people often dribble food, spill food and generally tip food over by accident. The tray moulds to their legs and offers stability and a level surface. Rather than attempting to balance a hot teacup and saucer with cake on a tea plate, they can both sit safely on the tray.
10. Food and cooking. This was a huge issue, worrying about what they were eating and when. Concerns about leaving cookers on etc. We order weekly meals, a combination of fresh food, microwavable and oven meals. Mr C enjoys Wiltshire farm foods frozen meals. The wonderful dog walker cooks the meals as we worry about the cooker being left burning. There are products called stove guards and stove alarms by Innohome, I believe Fireangel is the UK Supplier. http://www.fireangeltech.com
Ensure that gas detectors and smoke alarms have been serviced and are working properly.
11. I.D cards, you can go online and make a dementia ID card for the elderly person but adapt it to say, “Hi I have dementia if you find me lost or confused please could you call this number.” This can be helpful if they are found by the police or if they ask for help in a shop. My friend passed them out to local shop keepers and someone called her to say her mum had been sitting at a bus stop for over an hour.
Cards are cheap and easy to order in bulk, pop one in your parents purse, jacket pocket, wallets etc. The cards also give peace of mind, especially if going on holiday. Can include contact details, doctors number, medications, emergency contacts etc. I believe you can get them via NHS, but going online allows you to multiple buy.
11. Toilet frame: after falls and brusied hips, it is difficult for elderly people to rise up from a sitting position. The toilet frame gives them confidence in the loo and is a good secure frame for them to lean on and elevate themselves. We brought this one to my house over the festive period and one of my visitors is now getting one for his mum!
12. Memory books and photographs albums are always good tools but write in the album who the people are.
13. Giant calendar. Elderly people can get anxious about appointments and can become agitated and repetitive. A giant calendar, with clearly marked appts and activities can give them a sense of reassurance. A routine certainly helped us.
14. Mrs C gets easily agitated in restaurants with background noise. Large groups of people or just clattering plates and cutlery. It can be helpful to carry earphones with relaxing music if this is an issue for you and gives you a little breathing space to finish up and pay the bill before leaving. I am not sure if this would work with people using hearing aids, but you could also try large head phones, which are currently back in fashion.
Travelling and the elderly/disabled public toilets. If traveling in the UK and using disabled toilets, to avoid difficulties accessing a locked disabled toilet in a hurry, pre order a Radar key. These let you have access to any locked disabled toilets in the UK. According to Diability Rights Uk, the official key costs around £5.70 and some local authorities give it out for free. http://www.disabiltyrightsuk.org/shop
And finally knowledge is power. Read about the condition affecting your relative, understand why they may be over reacting or ignoring you, there are plenty of leaflets and books about this subject. Books to read: The Contented Dementia by Oliver James.
It has taken my brother a long time to stop correcting our elderly relative, there is no point correcting them. In their mind, they may be in the 1970 and everything around them at present, is frightening and confusing. Dementia can be a terrifying word or diagnosis. Choose your language thoughtfully.
Dementia is something that my mothers husband is living with and coping well. He is not battling it, he is adapting to his memory loss with help and support.
When visiting Mrs C in the dementia unit, the nurse could see I was struggling and she said to me that, “Mrs C was happy in her own world and it can be difficult for others to accept the changes”.
That was an understatement. I wanted the old Mrs C back. I wanted her to recognise me. I wanted her to sit in front of me in her pearls and cashmere cardigan and make me a cup of her awful, stewed tea. Mrs C in a moment of clarity would sit and weep quietly on the bed, saying, “I’m so sorry, I can’t remember your name.”
I would always take her hand and say, “I’m Lou. I know who your are, your not alone”. Holding a hand or a simple hug can go a long way to reassure a loved one.
It’s not an easy road ahead, ask for help when you need it and be kind to your family and loved ones. They are as scared and frightened of the road ahead as you are. Everyone reacts differently and everyone journey is different.
I hope this helps someone. Thanks for reading, I appreciate your time.
If you would like to see more of my photographs they are available on Shutterstock. Click here.
Here are some useful helplines:
Helplines: http://www.Alzheimer’s.org.uk – National helpline : 0300 222 1122. Alzheimer Scotland: 0808 -808-3000
http://www.ageuk.org.uk– 0800 055 6112 – befriending, day centres, pensions advice, end of life planning, healthy eating, arranging social care, independent living products, legal advice.
Dementia helpline: 0300 222 1122. http://www.dementiauk.org – coping with dementia, Admiral nurses, types of dementia, getting a diagnosis, understanding changes in behaviour etc.
www. Carersuk. org – a fantastic website to help carers. Fact sheets and information, carers allowance, independence allowance, practical support, technology and equipment, online forums.
Power of Attorney is called different things in different parts of the UK. The Alzheimer society above explains the rules for Northern Ireland, Scotland, England and Wales.
LPA, Living wills, Deputyship and Enduring power of attorney are all explained above in the fantastic Alzheimer website. You will need a lawyer to complete the legal paperwork.
Books to read: The Contented Dementia by Oliver James.