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.

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.

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.

Not caring

Throughout my adult life I have been caring. I guess it began when I was a child. I didn’t do the caring for but I cared. I cared about my mum and dad and one of my younger brothers. Not so much the youngest he was a bully to us.

Anyway as an adult I had my children to care for. I was 25 when my first born came into my life. This baby that needed me to care for and be responsible for. Over the next 8 years his three brothers arrived. I loved caring for my children although there were times when I didn’t want to be a mother anymore. It was such hard work.

When I reached the stage where I could no longer tolerate being married to their father I did everything I could to be strong enough to continue caring for my children. Their father threatened to have them taken away from me. He could prove that I wasn’t a good mother. As if!

Once their father had finally left our home by court order. It was just me and my four sons. The two older boys were starting to make their way in the world, but they still needed me to care for their well being. I was a single parent for about 5 years before I met husband number 2.

Little did I know that I would become my second husband’s carer pretty quickly after we married. My sons grew up and left home but I still had to look after my alcoholic husband. I had hoped that during this marriage we would be partners looking after each other.

Eventually i had had enough and left my husband. Moving in with my mother whilst I got my life in order. I was looking forward to living on my own with nobody else to care for.

That wasn’t to be. Gradually I found myself doing things for my mother who was becoming increasingly disabled. I am now her full time carer.

I would say that I have probably had less than s year of not having to care for someone other than myself. Even during the time after leaving my husband I still didn’t stop caring. I might not have been living with him but I was still making sure he had food, money etc. I was still taking care of his paperwork. Sorting out his insurance, car tax and other bills. I became his unpaid secretary and personal assistant. I visited him in hospital.

It has now been 3 months since I last heard from him so I guess I am not now caring for him. I have enough on my plate caring for myself and my mother.

What a shock

I have had my new car for a few days now. I am enjoying driving it around. I am happy that so far I have not yet stalled the engine. I was worried about swapping my automatic for manual transmission after my last three cars being automatic. However what I don’t like is getting out and getting an electric shock each time I close the door. I am learning to use my sleeve. I’m gradually finding my way around the various functions on the screen etc. I have even managed to pair my phone. This will help when I’m out and my mother tries to phone me to see when I’m coming home.

In the last few days I have done a bit of gardening. The sweet peas are in as are the nasturtium seeds. Solar lamps are hanging in the crab apple tree and another tree that I don’t know the identity of. Solar powered garden tea lights are along the edge of the patio at the end of the lawn.

Oddly we didn’t have very much wild life in the garden. There were no Pigeons, no Doves, only one Robin a couple of times later in the day. Only one squirrel came for a visit and that wasn’t until tea time. We have no idea what was going on. I am happy to say that we have seen a robin several times and a collared dove but also the dunnock and some sparrows. We don’t often have sparrows in the back garden although they can be seen in the lilac tree at the front of the house.

Today is perfect weather for drying the washing. Unfortunately I am waiting for someone tall and strong to put our new washing line. However I have managed to hang my washing on an airer set up in the middle of the lawn.

I have been out to pick up some of my Avon brochures. I have another £80 in orders to add to my tally for April. I have more to collect on Wednesday when I shall also be putting more out for next week.

I had my second Pfizer jab on Saturday evening. I am pleased to report that apart from a slightly sore arm I have no other side effects. I’m not planning to be out partying any time soon but now that we have both had both our jabs we are a little more confident about seeing anyone else.

I have been knitting in yellow the last few days. an yellow and green striped jumper and a yellow pixie hat.

Unexpected practice

I don’t get much practice as I don’t take mum out very often. The first time this year was when I took her for her first vaccine on 1st February. Today I was taking her for her second jab. Easy, or at least it should have been. She had her first jab at our GP surgery but this time it was to be somewhere else. The majority of people in our town have been going to the next town for our jabs. When she got the phone call to book her jab she was told it was at this other place. We naturally assumed it was at the same place the rest of us had been before.

I parked up got mum into her wheelchair and pushed her along the pavement to the health centre , we were 10 minutes early. There were others walking away. I didn’t think much of it thinking they had had their jab. It wasn’t until we were inside the building that we found a notice telling us that the vaccine centre has moved to the community centre.

Stupidly I figured that this was the place I had gone to with the other parent when he had his diabetic eye screening. On that occasion I sat in the car dog sitting. So I got mum back into the car, drove to the car park by where I now thought it was. Having got mum out of the car and into her wheelchair again we made our way to the front of the building. There was no sign that anything was happening there. Back we went to the car. Helping mum back into the car. I then found out that the community centre is on a road leading from White Hart Lane. (not the home of Tottenham hotspurs). Finally we arrived at the correct place 20 minutes late. Yet again getting mum into the wheelchair.

Once we reached the front of the queue they couldn’t find her name so we had to proceed as “unidentified”. It was only a few minutes later that we were shown to the allotted vaccine station. Typing the information into the computer the young girl had a problem with the post code. Someone else had to come over to help. Finally we were free to go 40 minutes after the original appointment time. At least now I know where to go next week when it’s my turn for my second jab.

I think I can say that I got plenty of practice not only getting the wheelchair in and out of the car, but getting mum in and out of the car and chair.

Today I am grateful

I feel as though I have been moaning about my lot in life quite a lot lately. So I have decided to think about the things I am grateful for.

  1. My family
  2. I will soon be able to spend time with my family again.
  3. Sunshine
  4. Having a garden
  5. The ability to bring life into our garden
  6. The wildlife that I get to see from my armchair
  7. Living near to various beaches
  8. Avon – my sanity
  9. Knitting
  10. Reading
  11. Technology – video calls
  12. Technology – research and talk to others with my health issues
  13. A roof over my head
  14. Enough food to eat (even with an unconventional diet).
  15. Being single
  16. Friends
  17. Independence
  18. Sense of humour
  19. Love of colour
  20. BEING ALIVE

It didn’t take long

I was only out for an hour. When I got home mother told me there had been naughtiness afoot. Firstly one the squirrels has been digging in the pots with my seedlings in.

Secondly mother herself has done something naughty.

For the last couple of months on and off I have been looking for a new car. This morning I found one that I think will be suitable for our needs. Although it will mostly just be me in the car I need something that I can easily get a wheelchair in. Plus the passenger seat can’t be too low or too high for mother to get in.

She has arranged for me to go and have a look at it. Apparently the salesman can’t come out to show it to me and I can only look at the outside of it.

If I decide that I do want it the paperwork will be emailed over to us. This car could very well be my birthday present.

I’ll let you know more when or if I do decide it’s the one.

Being absent in my own life

The last week has kind of passed me by. I feel like I have gone back to the first few months after my surgery. All I have wanted to do is read or sleep. I’ve been falling asleep 3 or 4 times every day. That’s not normal even for me.

I have been doing other things like a spot of gardening and a bit of avon. I have even gained a few new customers.

I have made an appointment to have a telephone call from my dr. I managed to get the earliest appointment Friday 9th April, after I was told I could ring up at 8am each morning to see if there are any available appointments that day. Whilst this is causing me a great deal of stress it isn’t urgent urgent. I have been dealing with this problem for 20 years but it is getting worse.

In the last few years prior to my surgery I was experiencing constant leakage because my bladder had deteriorated. This was very unpleasant and inconvenient but I didn’t feel unwell with it apart from the frequent kidney infections.

However my bowel problems are making me feel drained, uncomfortable and unable to do very much. Just moving around can trigger an “accident” . I have very little and sometimes no notice at all that I need to go.

Throughout the 20 years since I underwent radical radiotherapy for my stage three cervical cancer. (I know I’m lucky to be alive). I have tried to carry on with my life. This last week I feel as though I have withdrawn from my life.

Although I am my mother’s carer she is worried about me. I don’t want her to worry. Apart from not wanting her to worry I don’t think I can cope with her trying to diagnose my problems and come up with remedies.

I want to be my usual cheerful persona. I think when I see people I manage to carry that off but I spend so much time with just my mother I am sinking into myself.

Today I plan to pick up the last of my march Avon books and do a little more gardening. I hope my body allows me to do these things today.