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.

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.