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.

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.

The sun came out today.

All through May we have had lots of rain and not much sun. For many of us we still have our heating on. After all my excitement at getting our washing line put in 10 days ago, I have not been able to use it yet.

Today the sun has been out. It has been our first warm day. I actually went out without a coat/jacket. I have seen photos of friends enjoying a drink in the sunshine. Others have been on lovely walks in the sun.

My views today have been from hospital windows. Today was the day for my colonoscopy. Yesterday l spent the day drinking 4 litres of klean prep to clear my body out. ( No food after 8am and that was only rice crispies.) My day was spent in the bedroom so I could be close to the bathroom.

This morning I subjected myself to the hospital staff. I must say that I had a very kind gentle Portuguese male nurse looking after me. He was so considerate of my feelings and comfort when he needed to insert a cannula. I had told him of my needle phobia. He took the time smoothing my hands and arms to find the best vein he could. Apparently my veins were very wobbly.

He promised me that he would only make one attempt to get the needle into me. It did take time before he finally pierced my skin. Success first time. It was then time to don the non flattering gown and paper knickers.

A few minutes later I was in the room where the procedure was taking place. I remember getting into position on the bed and a sedative being put through the cannula. I was aware of being wheeled into the recovery room.

As usual after an aesthetic I was being sick. I was informed that my ride would be here at 11.30. I asked what time it was now. 11.15. ( no way would I be ready in 15 minutes). I let him know to come back in an hour.

After all that it seems that my fickle body has yet again come up short. This is not the first time I have had an invasive investigation that couldn’t be completed.

“Procedure limited by benign stricture” Further investigations required.

Next step is for a CT scan. Oh great joys. I don’t mind these but it usually involves having another cannula.

Being unfamiliar with this hospital it didn’t help that there is construction work being carried out which made finding the drop off and collection point difficult to find. I was dropped off at the wrong side of the hospital. I was being collected from the same place. This meant that I had a long walk going to and from my treatment. A very kind make nurse carried my bag walking me back to the pick up point only to discover that my lift had managed to find the main entrance after all. More walking followed. I was so relieved to finally find my car. 2800 steps isn’t much but right now to me that was a huge effort.

Having left home at 8am I was back home at 2pm and went back to bed. Having had a deep sleep I returned to the land of the living just before 5pm. I am now starving, my stomach is rumbling. I shall be ordering a take away to be delivered tonight. Do I opt for chips or Chinese?

Tomorrow is another day. At least I can put today behind me and know that I won’t be going through that again.

I am hoping that tomorrow I shall be able to go out in the garden to soak up some 🌞

Spanner in the works

I had it all planned out. Books out for collection Friday, Monday, Wednesday and Friday that takes me almost to the end of the month. I was late getting started this week. Then other things got in the way so there are no books out for me to collect today.

Because of my low energy levels I’m only putting out around a dozen books each time. So now I need to do a few more each time to get round to all of my customers.

I found out this morning that I am having an endoscopy next Thursday. Which means a covid test on Monday. Then self isolate from Monday to Thursday. I am likely to be feeling rough on Friday.

I am now going to attempt to get all my books out for pick up this Friday and Monday. I won’t be able to do a pick up next Wednesday so no point putting any out for then.

I did know that I would be having an endoscopy within the next two weeks but hadn’t considered that I would still have to isolate after all have had both jabs and putting out and picking up books doesn’t really involve seeing anyone.

Once, twice three times a doctor.

This morning my day started with a very long chat with my sister in law. We keep up with what each other is doing via Facebook buts it’s been ages since we had one of our long phone chats.

Not long after that my phone rang. It was the hospital. (Not the one I usually go to). They have got the results of my latest blood tests. I am now booked in for a telephone appointment on Tuesday afternoon.

Half an hour later another phone call from the hospital. This was a wrong number as I am not and never have been called Mary.

I have been feeling out of sorts today. I have had some news that although not altogether unexpected still shook me up a bit. I felt the need for cake. So before putting out my books I went to the shop. I was wandering around at a slow plod when my phone went off again.

This time it was the doctor I spoke to 2 weeks ago. She apologised that everything wasn’t progressing as fast as she had hoped. My latest blood test shows that my iron level is steady. Still very low due to iron deficiency.

She has prescribed iron tablets but I’m not to start them until I have had my telephone consultation with the hospital. Depending on how they want to proceed the iron tablets might be a no no. She says my vitamin b12 is ok, on the low end of the range but not too low.

At the moment everything hinges on this telephone call on Tuesday. I want to get this sorted out but I’m worried about what it will lead to.

I’m not looking too far into the future just taking it one step at a time.

I had been hoping to write something light hearted today as my last few posts have been a bit depressing. Maybe tomorrow I will have something happier to post.