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.

Seeing the dementia person as a 'real' person

Today George and I read one of his books and talked about all the memories this brought back.

I scanned many photos which I have used to publish books for both Mum and George. The first book I published was for Mum. I didn't put in that book who all the different people were so really I was the only person who could use that book with her. One of my nieces wanted that book. I made both Mum and George large 100 page books. Before putting the pictures into the book I put the photo into PowerPoint then used text boxes to put on each name, I then grouped everything and saved it as one picture to put in the book. This meant that they could read the names themselves or others could point out who the people were. When I put the pictures into the book I would often also add a caption. These published books are high quality and there are many companies on the web where you can go to make these books.

This photo shows Mum's grandparents, her mother (Rose) and her uncles and aunts. 

I have found too that staff in the homes love these books. Seeing these makes staff (according to the research) view the residents differently. Another thing that helps this process is telling staff small anecdotes about your loved one's life. The research points to these residents being treated better.

Decisions, decisions, decisions

I have been patiently waiting for alterations and repairs to be done to the property we live in. We have been waiting for over five years. During this time George's Alzheimers has progressed a lot as can be expected.

Last year I realised that it means that George and I, along with all property, have to leave the property for at least six months. George has to go into a rest home due to his condition and his incontinence. We will be paying big time for this.

I have been very worried about how this will affect George's condition. I arranged so that when it happens George's routine will continue as much as possible.  This has been done with the expectation that I would be bringing him home.

However I now think that this is unrealistic.

I have recently been told that his disease has progressed to a point where he will no longer be able to attend his club.

George is going in to respite care so I can do some packing, it is impossible with him around!


For the last two weeks his regular caregiver has been on leave so he has been having a lot of relievers. While some are good others are not. As a consequence it has been a difficult two weeks for me and George has been extremely confused. It is in the lap of the God's as to whether George will be able to come home after the six months. Increasingly it is looking less and less likely.

Catheters

Yesterday a nurse came to the house to change George's leg bag (this is done weekly). Unfortunately she did not push the bag into the catheter tubing properly resulting in them coming apart during the night; result - another wet bed so I had to quickly take all his clothes off, clean him up and put some new clothes on until the caregiver arrived a couple of hours later. Three loads of washing for him today.

His bed must be the cleanest and most aired bed around

Today I had coffee with a relative from Australia who was in a similar situation. We were discussing the cost of rest homes. Much cheaper over there. Here the cost of keeping one person in a home is the total salary a teacher with a minimum of 14 years experience and in a senior position gets. This is just the very lowest basic rate and then other things are also required. This is a lot and then of course, for me,  I still have to live. Unfortunately that is impossible so he won't be able to go into a rest home unless something radical happens. Luckily he is still compliant and non aggressive. Mum's fees were paid for but had I not gifted and paid for so much her estate would have depleted down to the threshold for a subsidy but had this happened I would have failed her and the family.

I guess I could go back to work to pay for this but I would now have to retrain in accordance with the new regulations and all the money would just be going straight to the rest home. Teachers, I also feel, have their 'use by date'. I used to see lots of them who were still in the classroom long after they should have been but they were still working because they had to as they needed the money. This is not good for the children in their classrooms and I have no wish to become one of them.

We do have a govt subsidy here but you need to have a very low level of assets and no extra income to get this. My super puts it out of my reach. My advice to others is to spend or put things into a trust when you are very young. We are taught to save for our retirement and then you spend it all on keeping others in rest homes, seems very wrong. I admit that this was not on my radar and I do feel envy for others I see able to travel and enjoy their families and their lives in retirement. However we just have to make the best of what the cards deal us.

Clapping time

Don't know where this one has come from but lately George claps a lot, hopefully it is to show pleasure. Catheter problems arise and I often have to change the sheets. I bless the day someone told me about the Artic sheets as they dry so quickly.

Because of George's incontinence I keep his linen separate. I also have to wash for him daily. I do a separate wash for other stuff.

He continues to deteriorate but then bounces back for a bit however the deterioration is becoming more and more. He certainly picks up when he has someone talking to him in a one on one conversation. I just have a feeling that when he needs to go into a home when our renovations and repairs are done that he will not be at a point where he can return home.

I have been really worried about the financial burden on me. I realise that I gifted one third of Mum's fees for the home as well as paying all her additional expenses needed in the home ( hip pads, shore gel, drinks, chocolate, clothes, name labels for example ) and in addition paid people to go and visit her. I also kept her car which enabled family members to use it while visiting Christchurch as well as taking holidays in the South Island. Costs for the car included warrants, registration all mechanical things as well as various other things such as batteries and repairing anything that happened etc. I did not use the car.  I guess that is probably the cost of the home all up so although I will not be able to do some of the things that I thought I would do in retirement at least I should not need to use savings for all of this so should be OK. Luckily my share of the estate enabled me to recoup the savings I had to use on Mum.

Assessing

Here, people from the hospital come to the home to assess the people with Alzheimer's. This is only done when the carer gets the doctor to put in a request. I was worried as George was still assessed at rest home level care for respite care and I know he needs more than this.

Basically here the levels are

• Rest home when skills are pretty good and they are able to do most things by themselves
• Rest home hospital level when there are physical needs
• Dementia unit which is secure and the dementia needs are prelevant
• Dementia hospital level when there are challenging needs which require a higher level of care

George has been assessed at dementia unit level. As he was booked in at hospital level for my upcoming respite break we have had to get a new facility for this time. I now need to go and visit this place before I take him there. It is amazing just how much time all these things take.

Another wet bed last night even though the two bags were taped together - oh joy.

Poor George

Poor George has been not too well with an upset stomach. Of course this means mess, mess, mess and changing... Just finished changing him again and putting another load of washing out soaking. He is on pills and I am watching his diet but not a lot else I can do. Lots of washing too.

I find that the more I find out about Alzheimer's the more I realize just how little we know about its progression. I find it fascinating how similar Mum's and George's Alzheimer's progressed especially when I am reading about, talking to others about it, researching about it for example, I find that each person differs.

Until Mum's sacral fracture and up until now both George and Mum relied on me and expected me to do things and have things organised for them, they then didn't worry so much about things and they also had each other to do things with as well as people coming to help at times when I was working. Things worked like this for a number of years and ended for Mum when she landed in hospital. She blamed me for that which was the beginning of her getting to the stage of not being able to stay in the home which was such a shame. That was when the anxieties started and she certainly could no longer be left alone for a minute. I can see this happening to George too in the future but it is not something you can plan around. No matter how much you know that going into a home is the only thing that can be done you always feel incredibly guilty about doing it. I don't think anyone who has not been in this situation can understand how bad and useless it makes you feel.

Both George and Mum always had beautiful manners and this appears to be something that they don't lose.I  wonder if those who are normally argumentative and aggressive just become more so when they have Alzheimer's, I suspect so. Actually manners is something that appears to be lacking nowadays, I notice that some people write emails without thought and these actually sound very rude to the recipient although I am not sure that is what is meant. Unfortunately the people writing don't read it nor do they actually understand how rude they can sound. As Mum and Dad always said good manners cost nothing, such a shame others don't have this philosophy.

Neither Mum nor George go wandering which is a help as this creates chaos for many families.

At the moment we are going through the 4 year anniversary of earthquakes that were so bad here. Things are still not that great here and it is going to take a long to get things back to 'normal'. I am still trying to deal with EQC, insurance companies and other things relating to this. Really this tragedy has changed many people's lives here. One thing it certainly taught many people here is how little money and things are worth, they are not the valuable things and that was bought home to all of us.

It doesn't take long

George has talked flat out since we left the home, I think they get quite lonely as they all sit in their own rooms a lot.

I quickly had to get back into the habit of getting him things to eat all through the day. He quickly made a lot of mess with food all over the floor and spilling drinks. I do try to keep a mat under him. He does try to go to the toilet but is unable to clean himself properly. I go through a lot of plastic gloves and baby wipes. To help keep baby wipes from drying out put a bit of shampoo in the opening and some warm water, seal back up and then shake around to soak all the wipes. This works well. I go through a lot of these.

George was looking through some photos and was looking at a photo of Dad. He said, 'I really miss your father'. They did get on well and used to tease each other a lot. We had a lovely conversation about it, so nice.

Home again

Got Gearge from the home this morning. Something I really notice about the majority of rest homes is that the residents spend a lot of time in their own rooms on their own. I contrast this with Mum's home where they are all in the lounge and the staff are constantly interacting with them; this is something I value highly.

On getting home we have looked at some of his memory books. This is something I try to do a lot in an effort to ensure that he recognises these people even though he doesn't see or rarely sees any of them. He is now starting to ask me who some the people in the pictures are. Today he asked who one person was? I said, "who do you think it is?' He then said 'he's a bad buggar'. I asked why and he said, 'he tells bullsh....'. There was a pause and he continued, 'he tells lies.' He was very pleased with himself for remembering who it was. I must admit it was very funny and he was almost shouting it when he remembered that, very excited he was.

 It is important to keep looking at pictures of family members and friends and to talk about them as if they are no longer in the person's life they will soon be forgotten.  He does remember the friends he has made at his club which is great.

He still has a bladder infection which I need to keep an eye on.

Visiting

As a child I always worried about everyone else and especially about people being lonely and feeling on their own with no one to care for them. I find that I feel exactly the same at this age. I know that one of the people whose wife was in Mum's home, worried dreadfully that if he died first then no one would visit her. I worry about that for George as really the only person he has is me. Mum is in a similar position although people have been visiting her every day since she went in to the home. I am not sure if this would continue if I died or not. Also her other daughters have come to visit from Australia several times each year. Even though I am no longer sure how much she understands I am sure that on some level she is aware that some one of her 'very own' is there. We were very concerned that she never felt that we had dumped her there.

Today I visited George and we chatted and had a coffee. I also took a Christmas present to a friend of Mum's who also has Alzheimer's and is in a home. She never had children and her husband died many years ago. I have been feeling guilty as I haven't been to see her for a while. Another cup of coffee and a chat. I will try to see her again soon as she was so excited.

Home again

George came home yesterday. The washing is already underway. The toilet paper is now coming quickly off the roll and is found in strange places. I have his seat well set up so that, hopefully, it will remain protected. He is still regarded as rest home level and not yet what they call D3 which is the level where they go into a dementia unit.

I use this home as it is one of the few that will take bookings. I have developed a good relationship with the admin staff and they always fit him in, sometimes in a very plush apartment. This home has largely been rebuilt due to the earthquakes. The rooms are lovely and the staff very nice. There are activities for the residents but very little interaction between staff and residents. I spoke to a nurse about this yesterday and she that actually there is not the interaction as they don't have time. The dementia unit is on the 3rd floor. This is something I would not be happy about, it is so nice for people to be able to go outside,everyone loves to smell the flowers. There is a lot of research to support this view about those with dementia and gardens. When the new gardens are completed at Mum's home I am planning to wheel her out into the gardens and sit in the sunshine, a thing I always appreciate.

Little things

It is the little things that count. This morning I left home to go and do some shopping at 8.30 a.m. As I got near the shop I thought, 'this is something I used to do but no longer can', the freedom made me feel great. Got a park right outside and was in the shop and back home in under an hour!! Wow, so great.

Last night I got a call from the home where George is and they said that they needed more clothes. This puzzled me and I asked what sort. They said he had nothing to wear to bed last night. I said that he wore onesies and that I had packed 2. They said that they were in the wash. I took more over. Guess what?? The other ones were in his drawer!!! I wasn't a happy camper.

This is something you need to be aware of: if anything goes wrong in a home where your loved one is if anything happens that they ring you straight away which you would expect but also be aware that while many times it is just to let you know about something other times you have to go to the home straight away. When you are the only family member around this means it is you.