This Question Really Hurts

I was not going to write about this because it is one of those subjects I find too painful to talk about.

However, I've decided to take the courage to talk about it, because I feel my feelings on the topic need to be expressed.

"Will you think about starting a new relationship if your husband dies?"

People keep asking this question, and I find it really upsetting.

Many of the people asking me know that my husband is a childhood cancer survivor.

He was very young when he went through this, and he has many disabilities because of it.

I spend the majority of my days and nights caring for my husband.

Here is a list of what I have to do:

• I help him when he falls
• I remind him to take medication and to remember important things like appointments
• I take him out, some days in a wheelchair. Other days, he uses a walking stick, but even on those days, I have to support him so that he does not fall.
• I have to watch for signs of seizures, because he suffers from violent shakes. Some days, medication controls these, and others, they don't.
• I have to try hard to understand what he is saying, and sometimes he will say something offensive without meaning to; therefore, I have to be careful not to misunderstand, which can have me in tears sometimes.
• I remind him to cook, and I have to remind him to eat because he forgets. There are days when I have to help him eat because of the shaking.
• I sleep in a room of my own often, because the shaking means I can get hurt, and my husband has nightmares in which he lashes out. I also have to manage his sleep paralysis because that can sometimes hurt him, too.
• He is in pain all day and night. The medications relieve it, but they do not stop it. The pain makes his right-sided weakness worse, which causes him to fall. That weakness makes him fall even when there is no pain.
• I have to be constantly mindful, because sometimes he can't hold a knife to cut his food, and he needs help doing basic things like shaving. He also has times when handling things like cookers and kettles means he can scold or burn himself.
• There are times at night when I have to support him when going to the toilet and getting out of bed because he will fall.
• He can wake up and say he needs the toilet, and he will forget what he is doing.
• He experiences breathing difficulties, which means I have to be guarded day and night.

These may appear to be normal things that carers do, but I don't have much help from friends or family.

I do many of these things alone.

When people make careless comments like these, they forget about how long we have been together.

We have been married since 1999, but we have been together since 1998.

We met during traumatic circumstances when we were both in a psychiatric hospital

It wasn't all romantic, like you see on television.

My husband was battling his own problems whilst trying to get me to eat and drink. He had a seriously hard time getting me to talk because of the violence I had been through.

He also saved my life during a PTSD attack that caused me to wander onto a road, something I had no idea about, and also something that the staff at the hospital did not even notice.

He also became my carer during a time when the services, who were supposed to help me, re-triggered the trauma.

We have been together for most of our lives, and it is terrifying for me to see him go through this.

My mind cannot even contemplate the idea of him dying.

There are two questions that people need to ask themselves before asking me such careless questions:

• Would you cope with being asked the same question if you were in my shoes?

• Why is the focus on my husband, when the same thing could be asked about myself?

There are probably others who are in a similar position, being asked the same thing, and they probably feel the same way as me.

I just want to enjoy the time I have with my husband.

The list above is only a small list of the things I have to try to manage regularly, and caring is difficult most of the time.

Caring can be exhausting, but it is even more exhausting, both physically and mentally, when it is someone you love, are in a relationship with, or are married to.

I do not have a team of carers behind me or any staff that I can do shifts with.

I do this day and night, and I do it unpaid, because my role is done out of love, not as a job.

There are not many people who have seen the tears streaming down my face, because I tend to cry alone, where I can't be seen.

Some of my tears are due to exhaustion, others are because I hardly sleep.

The point is that I go on because I care.

I am fully aware that everybody dies at some point in their lives, but my husband still has a life to live, and I am more grateful for that than anything else in this difficult world.

Instead of jumping ahead and focusing on what might happen when my husband is no longer around.

Why not ask:

"How are you?"

Or,

"Is there anything we can do to help?"

I know that many people have gone on to have successful relationships after healing from the loss of their loved ones, but I also know that many people, even those without caring roles or health problems, can not even contemplate the idea of losing their partners.

Why ask the question in the first place, particularly as death is not even on the cards yet?

The truth is, I am not ready to think about it.

I can't even say if I would ever want another relationship once our time has passed.

The only thing I want at the moment is compassionate and caring friends, whether male or female.