Stagnating

I know that people with dementia need to keep having their brains stimulated. It is well known that when people are put into care that they go 'downhill'.  I have seen this happen.

A man, Roy, was diagnosed with early onset dementia. He lived at home with his family. He went to the same club with George. He was always talkative, enjoyed a good sense of humour and was enjoying life. He went into the same home as George at the same time however he was still classified as rest home level and not dementia. I saw him most days when I went in to see George. He knew who I was and always greeted me. He always had a twinkle in his eye. Now 5 months later, the light has gone out of his eyes, he is now in a dementia unit with George, knows no one and sits in chair and sleeps the day away. It is so sad. I have never seen anyone come in to visit or take him out.

George has remained at the same stage. Obviously carers cannot ensure that all the residents are engaging in activities to provide stimulation. By going in each day I ensure George engages in everything even when he doesn't want to, for example exercises. I do it with him and then he really enjoys it. I also talk to him so much about his life, his family and his friends. We also talk about what is happening in the world. George getting the one on one helps him, I did the same with Mum.  I always have chocolate or marshmallows which everyone shares. They all think I am there for them too.

I look at how well Kate Swaffer is living her life. Five months ago I would have said Roy was in a similar situation. Are we letting these people down? Do we need to concentrate on helping people live well and helping those around them to support them? 

As I have always said "quality of life"

Organizing ourselves

George has had his eldest son here for the last three days. they have spent so much quality time together. We took everything pretty slow and he was very much part of the conversation and was quite lucid most of the time. There were times when he was not totally coherent but we just went with the flow and he seemed to come back on track.

During this time George's son also had various things to do while he was here so we organized it all and it worked out really well. Lovely for me too to have someone to chat to and to show the building repairs to...

Yesterday was the last day and George was tired out. We stayed in the home with him and while he would wake and chat he showed no desire to move. The two of them shared a bottle of red wine which George loved.

It is so lovely to have these family times as George's son will have this lovely memory to take away with him of the wonderful time they spent together. 

Enjoying family times

George's eldest son is over from Aussi at the moment.

When we arrived at the home today he was asleep. Initially he only saw me but couldn't remember names. We took him out to Honeys cafe. He loved it and with the attention became less confused.  He had a lovely time. We got back to the home in time for Happy Hour and we left him ready for a red wine. There were several visitors in the lounge and we all had a great chat. It was lovely the real sense of 'a group of friends enjoying each other's company' from everyone. I think the fact that the visitors were seated right around the room and we were all contributing to the conversation and joking. All the residents were joining in. Just lovely to see.  This provided a great quality of life for all of them today.

When we got back I asked George to open the car door while his son got the walker out. George opened the door and promptly shut it again.  He didn't know what to do once the door was open. He repeated this three times. Finally we managed to keep it open.

One of the other residents, Barney, was waiting at the door when we arrived. We sat down until he moved away. We went inside with a carer. Barney was at the other end of the hall, heard the door opening...  He turned, and with his walker ran down the hall to get out of the door before it closed. Luckily he didn't make it.

We try to be careful that we do not tire George while we are out. Tomorrow we are taking him out again.

Busy, busy, busy

I don't know where the time goes but I certainly don't feel 'retired'.

Last week George's eldest son unexpectedly arrived for a visit. As I am camping in a munted house at present it wasn't something I was prepared for. I rummaged through boxes and found some bedding to make him up a room. Luckily he didn't mind camping too. We spent a lot of time with George and took him out during the day. With two of us we were easily able to manage it. We paced things each day visiting coffee shops and a pub! George just loved it. He had some really good lucid times where he and his son had a great conversation. We had to be careful not to wear him out. One day we did not go out as George was not having a good day and was unable to stand up. It was lovely that he was here for nearly a week so we had the luxury of taking each day as it came, as I usually do. It certainly provided George with a great quality of life during this time.

George has had some really good days since he was here as well as some very sleepy days. He really loved being fussed over by the two of us and it is wonderful to know his son is coming back next month.

In discussions with George when we were talking about what the three of us had done George said

It was marvellous

Father's Day

Today is Father's Day. I always try to make it special for George.

George was having a good day and was very lucid. He had had a good sleep and a big sleep in which makes a difference.

One of his sons sent a card and a gift - chocolates which are appropriate as he has developed a really sweet tooth like Mum. We carefully put these in his top drawer where we are hoping others won't find them!

I took in his regular milkshake as well. I also took a card from all his sons.

He cannot open things any longer so I open them and just have the contents peeking out. He is then able to get the card or gift out himself. He no longer makes sense from reading so I read the cards for him. He was thrilled with everything.

We looked at photos of him with his sons. This way I try to ensure that he knows them and who they are.

I have always believed that Mother's and Father's Days should be about family and doing something for the person, not just grabbing a gift. Spending time is important!

When I was teaching the children and I brainstormed all sorts of things their parents would like. These did not cost money but time and effort. It might be cleaning the car, doing the dishes or getting the parent breakfast in bed for example. The children then made a cards and a voucher for their parent. They then fully understood that the parent could use the voucher as appropriate.

Parents and children all liked this.

Something I did today was to text someone who has been a wonderful father to his children, I just told him what a wonderful father he is.

So good to celebrate days to make them special. Although George may not remember it for long you need to enjoy being in the moment.

Doing his own thing

George has always lived his life to the beat of his own drum. He has always been very slow doing things, he has been rarely on time for anything and he refuses to be hurried. Several decades ago I worked out strategies to get around these idiosyncrasies. I always told him that we had to somewhere at an earlier time than we needed to be somewhere. I NEVER tried to to get him to be quicker - if I did he went slower...

His son always said the only times he was on time was for planes and trains because they won't wait.

He is now training the people in the home. Certainly it is in different ways but he gets up when he wants to get up not at a time that is convenient for anyone else. If the caregiver tries to get him to be quicker while he is having his shower he goes slower and will complain that this or that is sore. 

Yesterday, after they had tried to hurry him he just moved slower and slower with difficulty. They took him to the lounge in a wheelchair - who won that round. I arrived not long afterwards and his mobility was fine! 

One way or another he still goes to the beat of his own drum.

Out we go

George was not dressed when I got to his home today. The carer gave him a shower while I had a coffee and did the sudoku in the morning paper. I must say the carers are very efficient. One of the carers had broken his brush. Another carer has lost the blades out of his electric razor (these are very expensive). I must say that many of the carers just put the broken things away and do not mention when they are broken, very annoying.

As soon as George was ready we got ready and left. I made arrangements for his lunch to be held for him.

George asked how I knew how to open the main door. I told him I was magic! He liked that. He was able to open the car door and get into the car without any help. As we were going down the road the first thing he did was open the jar of peppermints to get a couple. I have always kept a jar in the car for George and Mum and it has always been the first thing they do when they get into the car.

We went to a local mall where he had a milkshake and a bowl of chips. He throughly enjoyed them. I asked if he enjoyed going out.

'It's spooky' was the reply.

Despite further questioning I am not too sure what he meant.

I bought a new hair brush for him while we were there.

When we got back I settled him for lunch.

He had a lovely time but I expect he was pretty tired after his outing.

Going out helps to give a quality of life.

Sweet tooth

Something I have found with both Mum and George is that developed a sweet tooth. Mum always enjoyed a wide variety of foods while George always preferred savoury foods. After developing Alzheimer's both developed a real sweet tooth.

I was reminded of this yesterday when another wife visited her husband. She promised to take him out for an ice cream on Wednesday, he just loves going out for that ice cream.

I always have chocolate with me. Mum and George both love sucking on chocolate. Don't know how many cakes of chocolate I go through but it is a fair few.

I have always ensured that they have plenty of fizzy drinks such as lemonade and ginger beer. In addition to the juice the home gives them this keeps the fluid intake up. Both have been prone to urinary tract infections so this is important.

While Mum was borderline diabetic frankly I didn't take much notice of that. She loved going out for coffee and pavlova.

Quality of life...

Ups and downs

i find that George is constantly up and down. On Tuesday and Wednesday this week he was so lucid and then the last two days very confused and sleepy. I am really reticent to take him out at the moment as he is so slow and frail when walking. I am wondering whether just to take him for a drive to feed the ducks when he doesn't need to get out of the car.

Today I bought a big Boston bun and a pineapple sponge car for them all to have for afternoon tea.

As I have told the nurse there 'quality is more important than quantity'. I just want George to have the best quality of life that is possible. I also felt the same for Mum as was known in her Home and I also did the best I could to ensure this happened.

Settling in

George is settling well into the home. He is very much up and down. On Sunday he was really down. His mouth was slack and he was asleep most of the day. As he has vascular dementia as well when he is like this I wonder if it is a mini stroke. Then the next day he was a lot better and very with it. He improved even more and now he is walking better as well as being far more aware of what is going on. I have spoken to staff and have taken some red wine so he can have a glass when he goes to bed at night. He is thrilled about that.

Something I am noticing very much is that I am only now starting to grieve. When Dad died my focus was on keeping Mum going so she didn't feel alone. I know I succeeded as she told me. She then moved next door so I kept everything going on an even keel for her and George. Then I had Mum in the home, George as well as the earthquakes to deal with. Now for the first time I need to look after me. I guess it is the first time I have had the time to grieve. It is so much to grieve for - Mum, Dad, George as well as the earthquake losses. It can be quite overwhelming. I knew it would happen but I had thought I was handling things well.

The birthday boy

Yesterday all revolved around George.

George woke early and was sitting waiting for me in the lounge. I dealt to his needs first and then got his breakfast ready. We sang happy birthday while he had breakfast and waited for the caregiver who wished him a happy birthday when he came in.

After his shower he opened his present with me and his caregiver. He opened  his card. Both things I had carefully wrapped so that they would be easy to unwrap.

We then waited for the nurse to come to deal with the catheter.

As soon as she had been we went to the Palms Mall so he could go to the Divine Cake shop to choose a cake. When we first entered the Mall the cake shop had gone!! We kept going and found that they had moved to a new shop. George checked out all of the cakes and chose a Tiramisu.

Next we went to Honeys where he had a toasted sandwich and coffee which he loves. The owner gave him a card for two free coffees for this birthday so he felt very special.

It was 30 degrees yesterday so lovely and hot. We had lunch sitting outside and watching the world go by.

On arriving home George found a parcel for him in the letter box. On opening it he found a lovely carved bowl from his oldest friend in Tauranga. He rang him and spent a pleasant half an hour chatting to him.

For tea he wanted to order Indian takeaways which we did (his favourite).

Later the caregiver came to put him into bed and then he had a red wine and watched a favourite movie.

He loved his day, it was all about him.

Today he has gone to his club wearing a silver hat. They will also spoil him there today and have a cake and sing happy birthday to him.

Social isolation

In today's paper an article about elderly people being socially isolated.

This is so sad and I am sure is because of families leaving their home towns and making lives in other places.

This did not happen in earlier times (and still does not in some families) and the families would gather round and share looking after their elderly family members.

Today many families do not worry too much about the elderly members of their families. Often the elderly are put into rest homes where they spend all day in their room. Once in a rest home many family members feel that they are OK there and don't make the effort to go and visit very often.

Going in to visit and take the time to talk and have a special time with your family member/friend is so important to them, don't just think that they are OK.

Often when a family is living in all different places, or for other reasons,  there is one member of the family who does most of the caring for the person. If you are a member of a family where this is occurring and you are not the primary caregiver don't forget to acknowledge this and don't forget that it is often costing a lot of money to give your loved one the quality of life you would want for them. Do you envisage reimbursing some of this to the caregiver or do you just expect that that is what they should do? Just remember too that this caregiver can also become quite isolated due to their commitment - acknowledge and thank them appropriately - don't be half hearted about it, remember how much they are taking off your shoulders. Criticizing whatever they are doing does not help them. Just a few thoughts.

Quality of life

Last week a community nurse told me that George had the best quality of life of any of the Alzheimer's people she dealt with. I felt really good that I have been able to provide this and I also did try to do that for Mum too. I was known amongst many of the medical people as a great advocator for both of them.

Something I do for George each night is:
When he gets into bed I put on a favourite movie and give him a red wine.

He has drunk red wine (lots of it) for many years. As of course, this is not good for the brain cells I do limit this now.

I try to hide the wine cask in different places but he always managed to find it and try to pour from it!! Wine all over the kitchen cupboards and floors. I finally found that by putting it in the oven he hasn't found it there.

Recently he found a box (with coffees) and thought that it was red wine.

Result:

 

He then tried to pour a red wine from the box on the left...

The change around

George was very bemused all week and had no idea of anything. I had taped the Springbox v the Pumas game for him but he had no idea of what was going on even though I tried to talk himthrough it. He had no idea of the game or what the teams were.

What a change on Sunday!

When he got out and came through people on the TV were talking about the game. George sat down and said 'we won'.

I put the tape on so he could watch the game. He loved it. He followed it all and knew who the All Blacks and the Wallabies were.

After that we went to Honeys to meet another couple. George was able to tell them about the tours he did with the game and stories about many of the old players. He really enjoyed reminiscing the old days.

Great that he has bounced back although you never know how long this will last.

Enjoy these times

A wonderful 3 days

George's eldest son came over from Australia to stay with George for three days.

George's son concentrated on spending quality time with George while he was here. He was very patient with him and George was very ‘with it’ all weekend and took part in most conversations and certainly knew what was going on. This weekend meant so much to George. The first night although he was absolutely buggered he did not want to go to sleep as he didn’t want to miss a minute of being with his son. We spent the whole time out and about (which George loves). Friday we went to Honey’s, then in and George's son saw George's Harakeke club, did a quick drive around in town and then down to the library ending with a drink at the pub across the road. That night George did not want to go to bed even though he was really tired. His son watched a movie with him (George was in bed) and he really enjoyed having him there. 

 On Saturday we went to the Markets at Lyttelton.. George had soup, whitebait patty, and we all had an ice cream (real berries). We then came back through the tunnel to Sumner where George's son spotted a bar which we hadn't known was there. Settled down with drinks and I took some video of the two of them talking. We then went to The Warehouse but George was really flagging by then so I got him back to the car. So then on Sunday back to Honeys after watching the NZ v South Africa game and then a quick drink at the pub before getting George's son to the airport.

During the weekend they  spent a lot of time ‘chewing the fat’ and looking at photos and talking about the old days. 

It is spending quality time like this which is so beneficial to both of them. George's son will always have this time together to look back on and George will remember it for a long time to come. 

I take a lot of time (all the time) talking to him about his family to keep them alive in his memory banks and I will now add the things they did together this weekend to it.

The weekend was wonderful for me too as it is not often  that I have a proper conversation consistently as for the last five years dealing with Mum and George all the time I keep the language very basic so that they understand what I am talking about. 

Such a special time. 

Very exciting news

Just had a message to tell me that George's eldest son arrives tomorrow night to see him for a few days. George will be so thrilled to see him when he wakes up on Friday morning. He leaves again on Sunday so that will give them some time to have quality time together. So important. He stays here with us while in Christchurch so they will be able to go over lots of things together (maybe even watch the All Blacks).