It’s a waiting game

Mother finally came home on Tuesday 25th January 2022. She had gone for an x-ray on her ankle which turned out to be broken, on Wednesday 17th November 2021. It is taking a bit of getting used to her being home for both of us.

I was told that she would have her lunch before she came home and the carers would be here soon after she arrived. She is due to have 2 carers 4 times a day. Well it seems that she was about to have her lunch when she was whisked away in an ambulance. It took 4 paramedics to get her into the house on a Southampton sling/stretcher. This was at approximately 1.15pm.

We waited for the carers to arrive. Mum was left laying on her back on her new downstairs bed. Giving her a half cup of tea was a bit tricky. She did manage a sandwich. Eventually at 7.20 there was a knock at the door. One! yes just one carer had arrived. I did ask if there was anyone else coming. No he said its just me for the first night. There will be a care manger coming in the morning to do an assessment.

Although he wasn’t able to get her standing so she could use the commode he did get her cleaned up, changed and ready for sleep.

In the morning I got up at 6am not sure what time to expect the morning visit. It was a little after 9am when the care manger arrived to assess mum. One of the many questions she asked was does she need help with laundry, meals etc. She said no, so the next question was who does that for you? I couldn’t help it, the words escaped my mouth… “Her Slave!” Although she laughed she said she couldn’t put that. Anyway, she left and we continued to wait. It was 10.20am by the time the first set of 2 carers arrived. They were both very efficient and within 25 minutes she was up washed, dressed and put in her armchair. She was so pleased to be back in her chair after all this time. She had forgotten how to use the controls.

It was a bit after 12 noon when the next pair arrived. There wasn’t a lot for them to do on this occasion but they were very good with mum and soon had her comfortable. Around 5pm they were back to get her comfortable again. By then we knew what the time slots were.

Morning 7 to 10.30

Lunchtime 11 to 2

teatime 3 to 5.30

Bedtime 6.30 to 10

The carers cannot tell us what time they will arrive.

I quickly gave mum some dinner to make sure she was fed before bedtime whenever that would be.

I was surprised when they were back to put her to bed at 7.30

This morning I was up early again. Mum was quite uncomfortable laying flat on her back. I am unable to get her into a sitting position. If I raise the head of the bed it just pushes her head up which is painful for her. We waited and waited. Eventually I gave her some toast ( no porridge today) as that was possible to eat laying down. I couldn’t even give her a cup of tea. I think maybe a sippy cup might be in the future sooner rather than later.

The carers arrived to get mum up, the same two as yesterday morning, but it was already 10.10am. Again very efficient. However they had been gone less than an hour before the next two carers arrived. 11.20am.

Then we waited until 5.30 before the tea time visit. so this morning there was a wait of just an hour, then a wait of 6 hours before the next visit. Mum has now had her tea and we wait to see what time she wil be going to bed tonight. I hope for her sake it will be a little later.

Having been told that mum would get 2 carers 4 times a day for 6 weeks we are now told it is 14 days. We have a lady from Adult services coming next week. I wonder what will happen then. Even mum has realised that she will now need carers for the rest of her life although she thinks that as she gets stronger she will only need help getting up and washed. I think she will need more than that.

We will see.

Tissue Issue

Ever since I have been doing my mother’s laundry I have complained about her tissue issue.

I have no idea how many times I have emptied the washing machine to find that a tissue had been in among her clothes.

I lost count of the number of times I told her to remove the tissues before putting her clothes in the laundry.

She has now been in hospital since mid November. When I visit her (that has become more difficult this week with the rise in covid). I am given a bag of laundry to take home and wash. Not a problem. The bag of laundry I washed last week included a tissue.

If she is to be believed her tissues get removed and thrown away as soon as she has used them once. The nurses are always trying to tidy up her space.

Either she has been sneaky or the nurses have missed a few tissues.

Yesterday when I did the latest bag of laundry, even though I took each item out of the bag individually she still managed to get a couple of tissues in. Emptying the washing machine there was even more tissue bits all over the floor than normal.

Why oh why does she insist on hiding tissues in her clothing.

Do you know anyone who does this?

This is My Life

In a few months I shall hit that milestone birthday the big Six O. For nearly 40 years I have been running my own household.

For the last 4 weeks my mother has been in hospital with a broken ankle.

I know that being stuck in hospital with not much to do leaves a lot of time to over think things.

When I visited her the other day she asked me how I am coping being on my own running the house. She asks if I have enough money, am I eating enough.

On the radio a little while ago I heard the words of the great Billy Joel. He says exactly how I’m feeling.

This is my life, just leave me alone. For years I have wished that I lived alone. One day that will happen but not until my mother eventually goes into a nursing home.

In the meantime let me enjoy these weeks of living to my own timetable. I can eat what I want when I want. I can do what I want without keeping an eye on the clock (except for visiting time).

I know that no matter my age my mother will always think of me as her little girl. I know how hard it was for her when she thought she would lose me to cancer but that was 20 years ago.

All my life I have felt that my mother is disappointed in me. She says that isn’t so, but it’s how I have felt. It doesn’t help when she talks to me as though I am a child who has to be supervised at all times. I know that isn’t what she thinks.

In hospital she complains to me that the staff talk to the patients as though they are children.

I don’t know how that feels … Much!

Getting everything organised for when my mother comes home has been exhausting, especially as my energy levels are still so very low. I am enjoying being able to pretend that this is my life for a while at least.

All change

So much is going on. I don’t have the time or energy to process it all just yet.

Know that I am relatively OK. I will check back in when everything has settled down a bit.

Mother’s MS has progressed

Mother has broken her ankle currently in hospital

Rearranging house so that Mother has her bedroom downstairs

Everything else is just life as normal squeezed into the gaps between hospital visits etc

Lots to think about

I had asked for this a few weeks ago and today was the day. Two very pleasant young women (young to us) came to see us. They asked lots of questions and answered our questions.

Caring for my mother who has Multiple Sclerosis has become gradually more challenging. Having talked to these two specialist nurses we now know where we are at with this progressive condition.

It takes two of us to get mum in and out of the car. They suggested that we forget about taking her anywhere in the car. This doesn’t mean that she will never leave the house again. Instead I need to apply to our local council for taxi vouchers. For hospital visits etc we need to call a wheelchair accessible taxi so that she can leave the house in her wheelchair and stay in it from start to end.

She can also go to exercise classes run by MS society so that she can meet with others in the same boat and give me some alone time. We can get dial a ride to collect her and bring her back.

Then there is the question of getting her in and out of bed. The time is fast approaching for us to engage a carer to come in each morning to assist her with getting up washed and dressed. We both knew this was inevitable but being told that the time has come is kind of a weight off my shoulders deciding when and how to do this

There is also the decision that it’s time to think about moving her bed downstairs. When we do this I will move my things out of the dining room up to the bedroom.

We discuss other things to make life easier for both of us but that’s enough for today.

I feel as though a weight has been lifted off my shoulders but at the same time a feeling of deflation.

We have both been in reflective mood today with random thoughts about it all being spoken.

Mother had said that she now has to accept that her life has changed. She needs to go with it rather than fighting it.

Wendy

During my teenage years I lived with my family in the town of Tonbridge in Kent. I attended Hugh Christie Secondary school. The most famous pupil at my school was Dame Kelly Holmes (after I had left).

Today another girl from my school has been in the national news but not for a good reason. Wendy Knell was one of my class mates. I wouldn’t say we were best friends but we were friends whilst we were at school.

In my early twenties I lived in s bedsit in the nearby town of Tunbridge Wells along with the man who later became my husband and father of my children.

Unbeknown to me at the time my friend Wendy was also living in a bedsit in Tunbridge Wells. I don’t remember it being in the news at the time but at some point I learnt that Wendy had been murdered. The killer was never found.

Today though it has been announced that the man who murdered Wendy and another girl who I didn’t know has been charged. The same man has been charged with sexually assaulting the dead bodies of women in the hospital mortuary.

It won’t bring Wendy back but at least her family can now have closure.

Also in the news today Cervical Cancer in young women is much reduced since the introduction of the vaccine.

It was obviously too late for me. I had treatment for stage three cervical cancer about 8 years before the vaccine went live in UK.

I am so pleased that the majority of girls who might have developed cervical cancer are now being saved from what I went through.

Enjoy the rest of your day.

Tomorrow we are expecting a visit from a local specialist MS nurse to assess my mother’s current condition and give us help and advice to make life easier for both of us.

Reaching the Summit

Yesterday we had a visit from a specialist nurse. She came to assess how mother manages in the house and see what help she could give. Another grab rail will soon be installed.

Mother has been shown better ways of getting in and out of bed and her armchair. She has been forbidden from using the riser function of her chair. If she can do the exercises she has been given she will have more strength in her legs. This will make her less dependent on me which will be good for both of us.

Today I was out of the house for much longer than on any day since my surgery in August. I attended a mini socially distanced online training summit. It was a big occasion for me. Partly by managing to be away from home for more than just one or two hours at a time. Also for socially distanced spending time with friends that I haven’t seen for almost 18 months.

Whilst there I took a phone call from a ‘private number’ which turned out to be one of the drs at our surgery. She had the results of the blood test I had on Wednesday. Apparently I am anaemic again which explains my low energy levels recently. She has read the letter I had sent a few weeks ago. I was then grilled about my bowel problems. She is recommending that I am seen by a gastroenterologist urgently.

I am glad that my problems are being dealt with. However I am trying not to think about what this entails.

Mother survived her day at home alone. I made her lunch before I went out. She tells me that she has done her exercises. Perhaps in the not too distant future we will both be physically better off.

Sunny and cold

The last few days have been full of blue sky and sunshine. There has been warmth but also a chill wind or should I say breeze. The summer before last mother had a new decking installed outside the patio doors. This raised the level outside the door so that she could go outside without having to manage a step down.

Last summer she only went out a few times for no more than 20 minutes. On the really hot days it was too hot for her. The heat affects her MS. Mostly though it was too cold. I noticed over time that we only got the sun on the decking for an hour to an hour and a half mid morning ( before the temperature had become comfortable for sitting out). I would sit out but have to move my chair around with the sun. The sun moves around our garden giving patches of sunshine for an hour or two. The bottom of the garden where there is a sizable patio gets even less sun than the decking. The trees have grown up to such an extent that the garden is shrouded in shade. Our friendly tree surgeon did his best to create more light without cutting back too far.

In January we had a new fence erected between us and the adjoining house which at the time was empty. The new fence is a foot higher than the one it replaced. It doesn’t look that much higher but obviously is. I don’t remember a time when there wasn’t a conservatory next door. Now I realise that the sun we were getting on the decking was actually coming through the windows of the conservatory. My dilemma now is that The lady who moved in a couple of months ago has put up curtains which are permanently closed. I have moved all but two of my flowerpots off the decking as they were in constant shade. Do I just put up with the lack of sunshine or do I ask her to leave her curtains open? The garden on that side of the fence has pretty much full sun most of the day so it probably doesn’t occur to our neighbours that we don’t get much in ours.

This morning I was updating my Elliesdeal blog dedicated to my Avon business. I decided to add the link to the blog to my twitter account. I only created this account a few months ago. I’m not really up to speed with twitter. I am following a few people but don’t have any followers of my own so anything I post (or should I say tweet) is never seen by anyone else. Much to my surprise this morning I discovered that I do have a a couple of followers. It looks like a grand total of 4 people have liked or retweeted my posts recently. Let me know if you would like to follow me on twitter and I will give you the name on my account.

We haven’t seen much of the pigeons recently (we have a couple of magpies nesting in the tree instead. The doves come and go. We sometimes see a young one with an adult. The blue birds have been absent for a short while but I am used to them being around a lot then not for a while then returning again. At last after 3 years of living here I am seeing sparrows in the garden. Yesterday there were 3 of them in the buddleia bush, hanging feeder on the crab apple and even on the decking for a few minutes. Today I saw a great tit on the decking, it hung around for a while. We hadn’t seen any for ages. Usually they are only around when the bluetits are here.

Yesterday I had cut up an apple for the blackbirds. I saw one of the squirrels (Roger I believe) sat on the fence nibbling away at a chunk of apple. The dunnock has recently been venturing out of the undergrowth to feed on the meal worms that I put out on the lawn for the ground feeders.

I went out a little earlier than usual to pick up my Avon books today. That takes my orders for April over £500 with more books to collect tomorrow and Wednesday. I also had another order through my digital shop today.

I’m feeling at peace with my world today.

You could say it’s been a cr*p morning

This morning I ignored my alarm. That was a big mistake. I had no reason to get up at that time. My day would be mine to do what I like when I like. Apart from getting mum her breakfast, lunch and dinner. How wrong could I be.

Eventually I roused myself at 8.40 good by now mum will have finished in the bathroom and I can get in there. I have to get to the bathroom very quickly once my body is awake. My bowels don’t wait for anyone or anything. There have been occasions when I have got up only to discover that mother is already in the bathroom. I sit on my bed in agony waiting to get in there. Often not making it in time.

She is usually in there between 8.00 & 8.30 so I like to get there before 7.45 or after 8.45. This morning I couldn’t hear any of the noises that usually tell me she’s in the bathroom. Her walker bashing the door on the way in or out is a sure indication. So this morning it was quiet. I’m safe to use the bathroom.

As I was going in there I thought I heard a faint voice calling my name. I made it to the toilet without incident. I heard my name again. Not sure if it was my imagination I called out “just a minute”. There it was again my name being called over and over again. As quickly as I could I finished up and went to my mother’s room. She wasn’t on the bed. I knew she was in her room because the stairlift hadn’t gone down yet.

I found her on the floor beside the bed. I helped her into a sitting position and placed a pillow behind her back. I got her to press the button on her emergency necklace. ( I insisted she had one years ago when she was having falls when living alone). Unfortunately the speaker is downstairs so I had to go down to the dining room to speak to the operator.

The operator put me on hold while they spoke to the ambulance service. By then I was in trouble. Luckily I was wearing a long nightgown. I couldn’t stop my bowels from working. Why does it have to happen to me!. Finally I was able to rush upstairs managing to keep most of my accident from going everywhere. I quickly had a shower and threw in some comfortable clothes. Cleaned up the carpet in the hall then opened the front door. The ambulance had just arrived.

It took both men a lot of effort to get her standing and into a position where she could sit on the seat of her 4 wheel walker. They were unable to get her onto the bed. It was a good 5 minutes before she was sat comfortably on the walker without slipping off.

They did the usual observations, blood pressure etc. (High). They wanted to take her to hospital but she was reluctant. What she wanted was to get to the bathroom as she had soiled herself. Again it took ages for her to get going. She kept saying that she is not usually this slow. (She’s not usually much faster). Once in the bathroom she needed help. She was trying her best to sort herself out but she had managed to get poo all over her hands so everything she touched was also getting covered. I helped her as much as I could in such s small space. Between us we got her into clean underwear ( not clean anymore). One of the paramedics helped me get her standing so we could get her clean (for the moment) pj bottoms on.

Next she wanted to lie on her bed or go downstairs to sleep in her armchair. The paramedics talked about taking her to hospital but she said no. However struggling to walk the few feet along the landing she was hanging on to the banister. She asked me to get her wheelchair so she could get to the armchair. At this point it was blatantly obvious she needed help and she finally agreed to go to hospital for more observations and assessment.

I have now cleaned the bathroom. I should have done it sooner but I couldn’t face it for a while. Both our soiled clothes are in the wash.

I have called the hospital but they are very busy and couldn’t tell me much. They are waiting for blood test results.

update

Mother is back home now. Antibiotics for a possible chest infection. Occupational therapist is arranging for a therapist to visit her at home to assess her needs. She has flat out refuses any additional care.

There’s no helping some people

I have been talking to mother about care/nursing homes. She was saying that when my grandfather went into a care home and then a nursing home she didn’t give him any choice of where to go. She chose for him. Both homes were friendly and suited his needs and ours. I particularly liked visiting him in the care home although it was an hour drive for us.

When it was time for him to move to a nursing home we found one closer to us here. I was able to visit on my way home from work. I’m not going to say that he was happy there. I’m not sure he was happy. He was comfortable and well cared for. Unlike many of the other residents he still had his mind in full working order. He missed having anyone to talk to properly.

Mother has made a mental list of things she wants to take with her when/if she needs to go into a care home. She knows which paintings, books and music she wants and if possible her laptop if the home has WiFi. I have suggested several times in the last couple of years that maybe she should consider which homes would suit her otherwise she will be going where ever I find.

Talking of having WiFi reminded me of when my husband sold our marital home. He was 64 and having difficulty looking after himself and our home. I found a flat in sheltered accommodation for him. He checked it out and decided to buy one of the flats there. Not the one I found but another one.

The plan was that he would move straight from the house to the flat. Obviously he would have to sell/store most of the furniture. About two weeks before the planned move he had a meeting with the warden of the flats. This did not go well. Apparently they don’t have facilities for broadband which he needed for his graphic design work. They were also not happy that he wanted to work. (He hadn’t worked during our marriage).

I found him bed and breakfast accommodation to move into until he found somewhere permanent. Instead of a few weeks as originally planned he was there for 9 months. Finally finding a top floor studio flat. (Not ideal for someone who has frequent falls). He has now been in that flat for 2 years. The last time I spoke to him he still didn’t have any internet service connection. His ability to use technology is zero.

I don’t know if it is still the case but at the start of the year he had been having someone check on him weekly and meals delivered daily. He could have avoided so much hassle and be in a much nicer flat than the studio flat he now has if he had bought the original place where he would have had a warden checking on him.

Considering that he can’t use his computer. He can’t even get his TV working and he certainly doesn’t work. It would have been ideal for him. In a much nicer area and close to the town.

Even after leaving him I still did what I could to help him. I’ve stopped now.