A poem for all of us

This is one of those poems that all caregivers need to read frequently

Do not ask me to remember

Do not try to make me understand

Let me rest and know you're with me

Kiss my cheek and hold my hand

I'm confused beyond your concept

I am sad and sick and lost

All I know is that I need you to be with me at all cost

Do not lose your patience with me

Do not scold or curse my cry

I can't help the way I'm acting

Can't be different though I try

Just remember that I need you

That the best of me is gone

Please don't fail to stand beside me 

Love me till my life is done

Being an advocate

Something I have found is that it is no good thinking that because you have put a loved one into care that you can leave them there and visit occasionally. Research tells us that when caregivers see the residents as people they treat them better. In order to do this the family can tell anecdotes about the loved ones life. Having books and photos about their lives are always of interest to others and it is interesting to see their attitudes change as they realise the interesting lives the residents have had.

I go and spend time with George every day. George hates being pushed into hurrying and then he resists making things more difficult for the caregivers. When I see this happening I, tactfully, explain that I think they may find it easier if they do....

I have seen a carer take down his pull-ups to check the catheter. The pull-up was soiled and the carer thought it was OK just to pull it up. I was not a happy bunny over that one.

It was the same with Mum. You need to watch and monitor some of the carers, others ofcourse are excellent.

Just remember that your loved one may not be able to make their needs known and it is important that they have someone ensuring that they get the best care possible.

Support groups

George enjoys seeing me each day. He is still aware of who people are and seems quite settled.

When the carers ask who wants to go through to another area for an activity I have noticed that George just sits there. I suspect he doesn't know what is going on. I encouraged him to go one day this week when I was there. It was some entertainers who come in each week, they sing and the whole thing is very interactive to include the audience. George loved it. I have told the care givers to tell him to come so he doesn't sit back. He loves these things but needs the encouragement and support to go.

This week I have set up two support groups for people. The first one is for people who have someone in care. There are six of us at this stage and we meet in a mall. Our buses go between all the malls in the city and are free for those over 65.

I made sure I was there a few minutes early to greet the others. The first to arrive was a woman who recently put her husband into care and is suffering from feelings of guilt and is rather depressed. Her face lit up when she saw me waiting. When we left she told us all how much better she felt after the time we spent together and really she had a spring in her step as she left, so worthwhile. Everyone felt that they wanted to keep the group going so we have arranged monthly meetings.

The other group I set up is for parents of some of my old pupils. I found out by accident that one of my old parents is suffering from depression and not going out. She would also lock her doors and not answer. She really wanted to be able to out. I organised for another one of my old parents to pick her up and the three of us met for coffee and a chat. She loved it and felt very comfortable. We have organised to meet weekly. Many people here are still traumatised and suffering from depression after the earthquakes. I realise that people who have not been through some of these things would think 'get over it'. It is not that easy.

So good we can share information, have a laugh in a relaxed informal manner and build up a rapport to support each other.

Summit

An interesting Summit starts today

http://alzheimersdementiasummit.com/schedule/?inf_contact_key=a901b08af2a831f82cb8c00c0463ee2dc5192a90b8a7d0425313ac91af3664ec

It is online and free!

There's a series of videos by various speakers on different aspects of things to do with Alzheimer's. I have registered and looking at the topics it looks worthwhile taking the time to register and view.

Being on your own

While you are caring for a person in your own home gradually, as the disease progresses, their needs completely take over your life.

I found that I saw less and less of my friends. We stopped going out during the evening. You actually become rather isolated. During this time it is important to retain the contact with others as much as possible. I tried to have coffee with friends whenever I could. Of course the effects of the earthquakes has also made this difficult.

My family had all gone so I only saw them briefly when they came over to see Mum. My son and grandchildren are in the North Island and I always made time for them whenever I could. I live in our home town but doubt that my siblings will ever return now our parents have gone as they have made their lives in Australia and there is now nothing for them here.

Since George has been in care it has been a real time of transition. For over five years my sleep has been very broken. My sleep patterns have not yet returned. I don't worry about it and several times have gone back to sleep and not woken up until after 9 a.m., very unlike me. I haven't had a lie in since I don't know when.

I am now 'camping' in my munted home while the flat where I live is being repaired. I now live on my own for the first time ever. It is a funny feeling. I am pleased I have my cat, Fluffy Bum, who sleeps on my bed at night which is rather nice.

I am having to make sure I eat proper meals! I must admit though it is just things I feel like.

It is lovely to not have the mess everywhere.

I am organising a group for people who have been carers and have recently put the person into care. We are meeting monthly at a cafe. It is good for people who are similar stages to get together like this as these people understand what you are going through.

Life style choices

There is no known reason why some people develop dementia. Often the people who do in fact develop dementia are people we do not expect it to happen to and of course the reverse is also true.

There are many articles written to help people try to keep their brains active in later life. It is important to realise this is no silver bullet as many people who do 'all the right things' will still develop dementia.

However we could do a lot more to educate people during their younger years.

Contact sports are played without any thought to the damage that is being done to the brain. Here people played on while suffering from concussion. It was considered that you did not leave the field unless you had to be carried off. Now people who are knocked out need medical clearance before they can play again. A good start but I do think people need to be aware of the dangers that may occur in later life.

Most adults have little understanding about dementia unless they have been directly involved in the care of someone with it. I personally had very little knowledge about it before I fell in the deep end! I have read widely and researched to find out as much as I can but boy there is so much to learn and no answers!

People who have the answers usually have little understanding.

Alcohol is part of our life style. Younger people often drink until they pass out. People who drink to excess often get involved in physical or verbal altercations. Often they are very aggressive but on sobering up have no memory of their behaviour or what they have said, often very hurtful and erroneous comments. Domestic violence is often associated with alcohol. Alcohol related dementia makes up a significant number of those people with dementia. The majority of younger people have no knowledge that this is a possible outcome of this behaviour. Teaching about this should be part of our Health curriculum.

Turkey

Today we learnt about the problems in Turkey. My heart goes out to them as well as those in Nice and the USA. What an unsettled time we live in now, maybe it is just as well my finances don't allow me to travel. Since Britain's referendum we here, in New Zealand, have received a lot of applications from British doctors and nurses to come here to live. A lot of New Zealanders are returning home and surprisingly many of our neighbours are relocating here. Part of it is that our economy is not as bad as many others and we are known as a relatively safe country.

George's home is still in lockdown however I still go and see him and ensure he is OK. He just loves those milkshakes. I figure that they are giving him sustenance as well as fluids. I hope they all recover soon. 

Money flies!

Once you have a parent or spouse go into care you will notice that money flies out of the window and honestly it flies out quickly.

Our economists have worked out how much people need to save in order to be able to have a good standard of living once they are retired.  Unfortunately this makes no difference for the carer. In New Zealand our Government helps with the fees when assets reach less than one fifth of what the economists recommend you need for retirement. Unfortunately this means that carers will not have the retirement life style we all dream of, for example travel. We will always be in the position of needing to watch every penny. Unfortunately more and more of us will be in this position. I must have been very bad in a past life to have been responsible for two, very costly.

Luckily George has dodged the illness in his home - fingers crossed! He is eating well but still very frail. When he first went in he often went out for a walk, not now! Carers in the home take the residents out for a walk when they want to go. They also have a nice garden area to go outside to wander around or sit in the sunshine. We have been having a very mild winter with lovely warm days.  George certainly feels the cold and wears a lot of clothes. This seems to be the same for a lot of the others too.

Lock down

George's Home is in lock down at present as many residents have vomitting and diarrhoea. Keeping fingers crossed at the moment as so far George has not been affected. I am still popping in with milk shakes and things but I am not staying for long.

Often, when I arrive, George will be seating in the lounge and be sleeping. After a while he will wake. He still recognises everyone and enjoys looking through his books and photos. We discuss the photos and talk about things we all did together. He also enjoys hand massages. His language is often really good and we will have a long and, sometimes, involved conversation. Another day his language makes very little sense, it varies from day to day.

He is quite happy in the home and does enjoy being with others. The unit he is in only caters for twelve residents which is ideal for him. He is getting to know some of the other residents many of whom and still operating at a higher level than he is.

Going out

George has been going downhill since going into the home. His mobility is really going downhill. Many days they use a wheelchair to take him to the lounge, a very short distance. When he first went into the home he was using a walking stick. Now he needs a walker and sometimes even that is not an option. This has made going out not possible. I am hoping that things improve. He is very frail. 

He still has a certain amount of short term memory and remembered some friends seeing him yesterday. I go in every day and take in plenty of drinks such as Cranbeery juice, lemonade and ginger beer. Most days I also take him a milk shake - just like I did with Mum.