I Spent Christmas Caring Alone, And Here Is My Perspective On That.

I'm not a working carer, and I don't get paid to do what I do.

I am an unpaid registered carer to my husband, and I don't have family or friends to help me do it; I do it alone.

Christmas can be a lonely time for people like me, particularly as my family and friends live miles away. Sure, I have a few friends where I live, but most of them lead busy lives themselves.

Over the years my husband has had mild disabilities until now. Just before Christmas, he was also diagnosed with Tachycardia

He has an irregular heartbeat which sometimes beats too fast.

He also has issues with severe pain which can last all day and night, and blood circulation problems which affect his legs.

Yesterday was Christmas day, and I usually spend Christmas alone with my husband because my family lives miles away from me and my friends lead busy lives.

I have had many spent many Christmases alone with my husband in the past, but today was a little different even though I am used to being a sole carer.

Different, because my husband's pain and tiredness have increased.

We have been waiting on adaptations to our property for some time now, and we are waiting for a feasibility assessment to be carried out.

It took a while to get an Occupational Therapist out, then we had to wait another few months for the surveyor to come out. Now we have to wait even longer for the assessment before the adaptations can go ahead, which makes life difficult in our house for my husband; and, that would be even harder for him without my help as he doesn't have any of his own family to support him.

We both managed to do Christmas dinner together, which my husband enjoyed. He uses a stool that is adapted to adjust to his disabilities so that he can sit down and join in with food preparation and cooking with me. We are using a tiny portable heater in the kitchen as my husband gets cold fast and that puts him in a lot of pain, though our kitchen is large and the heater does not work well.

We asked the council to install heating in the kitchen, which they said that they were going to do a few years ago though they never did it. Now, we are waiting on disability adaptations and my husband could be waiting longer. This Christmas has been really cold in the U.K., leaving my husband shivering and in a lot of pain, even if he has spent just five minutes in the kitchen; and even when wearing warm clothes. This is because of his problems with his blood circulation.

If the blood isn't circulating properly, then the body doesn't warm up properly.

It has made my husband feel really down as he usually enjoys cooking with me in the kitchen. However, he can't spend too long there, so he has felt worse because cooking Christmas dinner is one of his favorite things to do with me.

I bought him some warm fleece pajamas and a fleece blanket for Christmas in order to help him combat the cold, but without the right heating, this has been a struggle as the circulation problems mean that he gets cold faster. My husband can get so cold that he shivers violently with it, even in mild temperatures so getting the heating done is essential to keeping him warm, particularly as the nights come in.

I have had to watch him on the stairs and around the house as he walks. He has an extra rail but that does not stop him from falling.

With the freezing temperatures this year, I have had to help him more because he has been falling more frequently due to the cold, even when just going to the toilet which isn't far from the stairs or the bedroom. We have one downstairs, but he has been unable to use that because it feels more like a freezer this year. He is waiting for a stair lift, though a quote was done by the disabilities team in the summer, and nothing has been done since.

I spend most of the day and night helping my husband get to the bathroom. Sometimes, he won't let me help him because his disabilities make him feel like he is losing his independence. My husband was a strong, independent man who was a mental health nurse for 30+ years before his disabilities. This Christmas he has needed more help with this, as the pain is worse at night time when he feels colder. Even when the heating is on, it takes less than a minute for my husband to shiver from the cold after getting out of bed. This could easily be avoided if the adaptations were done faster because my husband's walking has severely slowed down due to the pain and the cold; the adaptations could provide much-needed assistance for him.

I have had a lot of nights where I haven't been able to sleep.

It isn't just paid carers and medical staff who do nights; some unpaid carers have to too.

I am often awake to help my husband deal with his tremors and nightmares, which are often worse in the winter. These are caused by the metal plates and damages that his brain endured due to an operation for cancer when he was very young. He also suffers from sleep paralysis

Sleep paralysis is a terrifying condition. My husband has nightmares that he can't often wake up from because his mind thinks that they are real. He often cries out, sits up in a paralyzing state, moves around in his sleep, and lashes out. I often have to attempt to gently wake him by putting my hand on him or talking gently.

Sometimes, I have to wait for the episode to end before I can help him.

When my husband finally wakes, he often remembers the dream as if it is still happening. He will be scared, dazed, and confused; often talking in delusional terms that he won't remember later.

This often worsens around Christmas for him, though the reasons why remain unknown.

The majority of my Christmas this year has been centered around my husband. I have managed to have some phone calls and texts with my family, but I haven't been able to call as much as I would have liked, and I have had to ignore some calls because at the time, I have been helping my husband.

We haven't been out much this Christmas, because the cold weather has severely affected my husband's legs, and even getting in the car has been too much for him, so we haven't been able to have fun outdoors.

Christmas can be isolating for unpaid family carers, some of us don't have people around us to gather with at Christmas, and like working carers, we are often exhausted because we don't get any breaks at all, and we have no team to share the nights with.

I am an unpaid registered carer to my husband, but this Christmas my role has been as exhausting as those carers working in a professional role.

I have had times when I have been that tired, I have cried alone. I have had times when I haven't been able to cook for myself. I have had times when I have been unable to make time for myself or to talk to family, and I too have had many weeks without sleep.

It is good that people give shout-outs to all those paid carers and medical staff, because they do a great job, and they did a great job during the pandemic.

I stand by those paid carers and medical staff as they fight for their right to more pay because as a sole non-paid carer I know what it is like to feel completely exhausted and drained in the world of caring.

All that I am asking is that people also show a little support for carers like me because a kind word at Christmas when an unpaid family carer feels lonely and exhausted goes a long way.

Caring for my husband alone has been hard work this Christmas, though it was and is always worth it; especially when I see him smile.

Thank you for your support and Merry Christmas!

I would also like to take this opportunity to thank all the staff at Vocal and wish them a merry Christmas too because this platform has been a great source of support to me as a sole carer, as it provides me space to write about my role and express my thoughts.

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