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.

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

It’s dark down here

Over the last few months I have reluctantly come to the realisation that once again I am suffering from depression.

Depression has been part of my life on and off for the last 40 years. Most of the time I manage to keep it at bay. I try to be a cheerful happy person. Now and again I have off days. Every few years it goes beyond that.

Seeing as this has not been my first bout of depression, I am able to recognise it even though I tried so hard to reject it.

My feeling of sadness, sleeping all the time, being disheartened at everything. Even the simplest of chores are a huge effort, have gone on for too long to be ignored now.

My advice to anyone else would be go see your Dr. So why have I not done this myself? I don’t see any point in seeing a Dr this time around. They have two solutions, drugs and or therapy.

In the past I have been prescribed anti depressants. I hated the way they made me feel as though I was walking an inch off the ground. I felt like I had no control.

After taking a couple of different ones over the years I vowed not to touch them again. I understand that for many people these tablets can be helpful.

To my mind they mask the problem without getting to the bottom of it. They might make you feel able to carry on but don’t solve the reason you got depression in the first place.

Way back in my early 20s I had a severe bout of depression. So bad that I had to give up my job. I felt I couldn’t survive the next hour let alone the next day. Obviously I managed to get through it. I asked my Dr if I could have councelling instead of drugs. A councellor came to see me at home. (Once). He was changing jobs, nobody came again. Even that one session talking through my problems helped me get back on track

Because I was out of work due to my mental state I needed to sign on for unemployment benefit as it then was. I had to give my reason for being out of work. How could I say that it was my severe depression. In those days any mention of having problems with mental health were taboo. Finding a new job would be difficult in the future if I explained the gap in employment was my mental health.

Anyway further down the line and several bouts of depression later I asked for help. All my Dr could offer was for me to self refer myself for councelling. I did that but it was several months before I was even offered any sessions (by phone not even in person).

So now here I am again. I don’t want to be prescribed medication. There is no point in asking for councelling. I know the reasons (yes there are more than one) for my current depression. Neither of my most pressing problems are going to be solved by councelling.

Firstly, my health is my biggest reason. Dealing with the aftermath of my cancer treatment 20 years ago. I am only too well aware that my insides are eroding. My bladder is nolonger an issue as I am now a bag lady. Oh yes I have recently decided to name my stoma Betty. Because life isn’t great but it’s Better than it would be without Betty. I am currently going through more scans, cameras and investigations to figure out the next course of action to give me some quality of life.

I am fed up of this body which constantly lets me down. The good days are now less frequent than the bad days. I am acutely aware of how my insides feel nearly all the time. If I get up in the night to visit the bathroom, I then spend anything up to another two hours waiting for my stomach to either settle down or send me rushing back to the bathroom. This can be two or three time a night.

I have a very limited diet, not only being diabetic but also fibre intolerant. I have many windy days/nights. I get bloated. I find eating meals increasingly difficult. I’m better off picking at food.

So although I am aware that my body problems are causing me to feel so bad, there is no quick fix. Hopefully after the endoscopy I am having next week my consultant will have a better idea of what he can do for me. I am due to have my appendix out sometime in the new year.

I would imagine that any further surgery won’t be until later next year. If I’m lucky I could be in a better place this time next year.

As if that wasn’t enough I am finding living with and caring for my mother is making me depressed too.

I do love my mother, I am also grateful for a place to live. What can I say. I don’t mind picking up after her, just generally being her housemaid ( she nicknamed me Daisy). We are now starting to get into the realms of personal care. I am not made that way. Caring for my children was one thing. Caring for an adult, even my own mum is not something I care to do and she doesn’t want me to either.

I’m not sure how much is her MS and how much her declining years possibly even early onset dementia but her memory is going. Anyone seeing her for a short time wouldn’t notice but in her day to day living it is becoming more noticeable to me. I don’t know how much she has noticed.

What is really making me depressed about all this is that I feel trapped. Living with my mother is not too dissimilar to living with my alcoholic husbands. Yes there were two of them. Not at the same time obviously.

Getting my mum out of the house is extremely difficult. When I go out on my own. I can guarantee that if I’m more than a couple of hours even if she knows it will be. Like my four hour round trip to see my granddaughter for her birthday. I will get a phone call asking when I’m coming home.

Before covid I was visiting my son and his family every 6 to 8 weeks, staying overnight so I could spend time with my little grandson. Now I don’t feel confident enough to stay away overnight.

It was bad enough when I was in hospital. I was speaking to her on the phone twice a day and my ex was checking on her daily.

Since then she has become more reliant on me at night too

Although I have now been living with my mother for more that three years I don’t feel that this is my home. It is the place I live. I know that there are so many people who are worse off than me. That just makes me feel guilty for not being happy.

I try not to let it worry me, I will be ok when the time comes. My future is uncertain. This house belongs to my mother. I live here rent free. If my mother dies whilst living at home the house will be sold and divided between myself and my two brothers. That’s not such a problem, I will find somewhere to live. What I don’t know is, what I will do if she has to go into a home. The house will go towards paying for her care.

So I know that any amount of councelling is not going to sort out my problems. Only time can do that.

Waiting

Last week I wrote about Abbie Greaves book The Silent Treatment and I was looking forward to reading her second book The Ends of The Earth. I finished reading it a couple of days ago. I would recommend it however it is a heart felt tale of love and pain.

Reading this book was bitter sweet for me. I enjoy Abbie’s writing but some of the characters took me back to my past. I’m not saying that these characters in anyway resemble me or my past. There are aspects of this sad tale which remind me of one of the bad times in my life.

Some people in my real life know bits of my story but I guess my mother is the only one who knows most of it and even so I didn’t divulge some of my truth until many years later.

When i was 20 I had been engaged for 2 years to M. After a falling out with his mother I was treated more like his mistress/dirty secret than his fiancé. Eventually I had had enough and broke it off. Some months later I began seeing A. He was an older man but we got on really well and he treated me so much better. He was serving in the army but we spent as much time as we could together. We had mutual friend that he stayed with at weekends.

At the time I had joined the Territorial Army in my spare time. I remember once being embarrassed when A had dropped me off for my weekly training. Someone commented about my dad dropping me off. Anyway it was t few days after my 21st birthday that I had been away on a weekend training exercise on Salisbury Plain. When I got back on Sunday night A met me at the barracks to take me home. He took me to our friend’s flat.

He wanted sex. I was tired, battered and bruised. I wanted nothing more than to sleep. He forced himself on me. I made it clear I wasn’t in the right frame of mind or body for sex. That didn’t stop him. I don’t remember how I got home, I guess A drove me. The following Saturday he came to see me. I told him we were finished. He was not happy. He raped me in my parents living room. I never saw him again for which I was glad. I never told anyone what had happened.

At that time police were not sympathetic and I knew that I wouldn’t be taken seriously, after all he was my boyfriend and this was years before domestic rape was recognised. Later I. The year I got back together with M. It didn’t work out, I had changed. Not only that but I found being alone with him difficult. I couldn’t cope with intimacy, I would always see the face of A looming over me. After several months I broke off my relationship again.

I found an ad in the local paper for a week in Austria traveling by coach. By this time I was 22 and in need of a break. I was travelling alone. Being one of the last passengers to catch the coach I had a seat behind the driver. During the long drive I got chatting to both drivers. Once in Austria we were split up around the village. If memory serves me right there were three of us staying in the house where I was staying.

Through out our stay there were events and trips each day. Most of the group were couples or groups. I was just me and often found myself with the drivers and our tour rep. Looking back I know that was a mistake. I was beginning to feel an attachment to the taller of the drivers C. We were spending more and more of our spare time together. Until I ended up spending the night with him. C was an older man (apparently I prefer older men), but younger than A. Amazingly when I was with C I didn’t see A’s face.

By the time I returned home we had swapped phone numbers. He had my home number and my work number. Whenever he was between trips I would catch a train to London where we would stay in cheap hotels. He told me he wouldn’t marry me but he wanted us to live together. I spent a few days with him staying with a friend of his. I applied for a job at his local airport.

Then the unthinkable happened. I hit a call from an older woman claiming to be his wife. S was 14 years older than him and he was 14 years older than me. I guess I will never know the real truth. C told me that he had married S to help her and her two daughters (my age). Every time he tried to leave her she cut her wrists or some other cry for attention.

For months I had to have my calls screened both at home and at work. S or her daughter would call me saying nasty things. I stopped seeing C. Then one night he arrived at my home saying he had left her. He couldn’t take it anymore. The next day we found a bedsit near to my work. That first week it was great coming back every evening to my meal cooked for me. The two of us together making plans. It wasn’t so great for C, he wasn’t used to being in a strange town alone all day with no work. It was his off season.

He told me that he had a friend in Norfolk who could give him work as a taxi driver Monday to Friday. He would be back at the weekends. He never came back. I refused to get upset. I couldn’t phone him, we didn’t have mobile phones in those days. After a few weeks I had a phone call from the Samaritans supposedly searching for C on S’s behalf.

I stayed at the bedsit until the end of our 3 month contract then moved back to my parents. While I was at the bedsit I didn’t see anyone outside of work and a few visits to my parents in the next town. I couldn’t give up on C, I couldn’t forget about him and move on. I needed to know where he was and what had happened. I kept my grief tucked inside me. I never cried, my health began to suffer.

I remember one day phoning my mother at work in a panic. I felt as though my life had collapsed, I didn’t know how I would get through the next minute let alone the next hour. I don’t remember what happened next but I got through the day. My work was suffering, eventually I handed in my notice. I knew I couldn’t carry on with my job in the state I was in.

I managed to persuade my Dr that I needed help but I didn’t want pills. He arranged for a councillor to visit me at home. Unfortunately he was about to change jobs so I only saw him the once. He told me that I was clinically depressed. We went through everything in my life that was making me feel so bad. That helped, just breaking it all down into different problems.

About a month later I got a job working in a bar then a job as an hotel receptionist. One afternoon on my way home I stopped at our local supermarket. On the way out I saw a face I never expected to see again. It was C. He waited for me to walk me home. As soon as I was home I ran to the bathroom to be sick.

It was 11 months since he had left me. He thought he could pick up where he left me. He explained that he had gone to Norfolk as planned but he had phoned home to check how S was. She was in hospital after another suicide attempt. So he went back to look after her. Now she was well and he was able to leave. I saw him a few times over the next couple of months.

I became pregnant, he said he was decorating the flat for S then we would be together. I lost the baby. Suddenly he was unavailable again. He did arrange to see me over the August bank holiday. Bizarrely I stayed with his younger step daughter and partner. We had become friends over the phone. She didn’t agree with how her mother and sister had been towards me. Anyway when I was supposed to see C it was S who turned up. I was suddenly very ill in the bathroom. Later we spoke and found that neither if us were the bitch we had thought.

Over the years I have wondered what happened to C and S. I moved on with my life. I met the man who gave me my four sons.

Abbie’s book was nothing like my story but it did get me thinking about it. I just remembered that one of my colleagues way back then once said to me. ” Your live life might not be happy but it’s interesting” . Thinking back on that comment I don’t know why she thought it was interesting.