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.

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.

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.

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.

When will it end?

What with all my poor health of late. I just wonder what life has in store.

I have numerous friends dealing with horrific health problems. No I’m not the only one.

Then last week my gorgeous, smart, loving daughter in law had surgery last week for an ectopic pregnancy. That would be bad enough but this was the second in under a year. Making this not only a tradgedy in itself but life changing for her and her little family. She so wanted a second child.

Several months ago I learnt that my best friend from school had lung cancer. If that wasn’t bad enough her brother died of covid at the start of the year. My friend and I had lost touch for a number of years when our children were young. In those days there were no mobile phones and no internet. I found her again through Facebook about 8 years ago.

We both had busy lives and always promised we would meet up again at some point. I had moved away from the area 33 years ago. Our communication was intermittent but we were still in each others thoughts. During one of our more recent communications I had promised that providing I was well enough I would make the effort to go and see her this summer.

Unfortunately it is now too late. My dear friend passed away peacefully yesterday morning.

Why is it that the good people in this life have to suffer so much.

Not here yet

i have lost track of how long I have been home from hospital. I still don’t feel like I am back in the he here and now yet.

Not only do I still lack energy but mentally I don’t feel as though I am back yet. There is so much I want to do but I don’t feel that my brain is in gear. I can read or knit or watch TV. I can cook simple meals and do a bit of cleaning. Anything that takes brain power just isn’t happening.

I have been having more than my usual amount of down days. I know that I will get through this. After all I am a weeble. You can knock me down but I will get right back up. It’s just that these days it seems to be taking longer to get back to my sunny disposition.

Maybe that’s because I’m getting older but maybe it’s because I feel like the knocks are becoming more frequent. I don’t know and I don’t like it.

Taking longer than I expected

It has been 12 days now since I came home from hospital. I knew that I had become very weak during my time in hospital. I did think that after a few days at home would feel more or less back to normal. After all I didn’t have any surgery this time. I was treated with intravenous antibiotics.

I am gradually managing to do slightly more each day but I wasn’t prepared for how washed out and frail I would still be feeling at this point.

I am still sleeping a lot. I’m nolonger in excruciating pain but still have some discomfort.

Apart from the extreme pain I experienced at the start of my hospital stay I had a complete week in stress from having awful diarrhea all day every day. I feel let down by the hospital because no matter how many times I asked for something to stop the diarrhea I wasn’t given anything. The diarrhea I was having was instantaneous. I didn’t have any warning. Thus in itself was stressful. Rushing to the toilet up to 30 times in one day. The frequency of bed changes that I needed. The knowledge that the staff were really busy and didn’t need. That extra work also played on my mind.

Once I was home again I took an imodium and another the next morning. Voila no more diarrhea until today. It is very draining when my body behaves this way. So I shouldn’t really be surprised that I have no energy.

I am taking iron tablets and using vitamin b12 patches so hopefully I shall start feeling more myself soon.

I’m home

After 11 stressful days in hospital I am back home. I still have my appendix in situ but have to have it removed at some point in the not too distant future.

I am currently feeling relieved to be home but very fragile and weak. I need to be kind to myself and give my body time to recover from everything it has been through.

I also need to get my head into the right space before normal service can resume.

Weighing up the risks

I have been in hospital since Monday morning. (My first ever trip in an ambulance).

I have appendicitis. I have been in incredible pain since Saturday morning. Normally I would have had my appendix out days ago. I’m a complicated case. Taking Ng out my appendix is a risk of damage to other organs.

The dr keeps telling me every day that my blood tests show I am getting better with antibiotics. I keep telling him I am not getting any better. The pain is still just as bad.

Another Dr has just gone to look at the scan I had earlier. Hopefully they can then come up with a plan.