The Shock Of Adjusting To Life Changes As A Carer To Your Spouse.

When I became a registered carer to my husband, we were both still quite young.

I was 44 years old, and he was 51.

There is a myth that caring for a spouse doesn't happen until you become elderly. It is still very rare that we find disability aids such as stairlifts advertised using young people.

Allow me to state a fact:

Babies and Children are sometimes born with disabilities, or they can happen unexpectedly as they get older. Adults can also find themselves dealing with a disability at a young age or an older age. Disabilities are not just related to older people.

My husband had cancer as a very young child, and his medical notes have shown that some of these disabilities were already there, though nobody ever told my husband about them when he was young.

The problem is that a disability can induce embarrassment, fear, shame, and guilt which can be very difficult for some families to deal with.

Let me just make it clear that I know my Mother-in-Law did love her son, and I understand that finding things out about a life-saving operation or illness that can threaten a child's life can be painful and frightening; especially as you can't say for definite what would that child's life is going to be like growing up, or as an adult, or know whether they will survive.

I was aware of some disabilities when I first met my husband, such as his right-sided weakness which was brought on by a cancer operation that took place when he was just three years old.

Neither I nor my husband was aware of the poor blood circulation, irregular heartbeat and weakened coordination and balance, the extensive scar tissue left behind by the stainless steel plates that were used to bridge the gaps where the tumor had been and to seal the brain stem together after the operation.

We were also not aware of the reasons behind the extensive mental health problems that my husband had endured over the years, because most of these events took place in 1972 when record sharing was rare.

The professionals were aware of it, and my husband's parents would have been aware of it. However, nobody thought to share this important information with my husband as he grew older; and the local authorities who were involved with us and our children in the 90s neglected to investigate it, even though they were told. This led our children into the system, while both myself and my husband struggled with the mental health aspects, and got the blame passed between us despite us asking for help with the situation.

From my perspective, I knew about the cancer treatment, though I was only aware that it had left my husband with a right-sided weakness, and some mild brain damage.

I spent over twenty years wondering why my husband's behavior had become erratic towards me and taking the blame for his behavior every time I spoke out.

That was until 2020 when my husband was hospitalized with Covid-19.

It was during this time, and only during this time that my husband's cancer treatment notes were looked at, and we were told about the other issues.

The doctors and local authorities from the past should have been given access to these notes. We might have avoided a lot of trauma if the right help had been given at the right time.

I am writing this because becoming a registered carer to my husband after 20 years of marriage has left me in shock.

twenty years ago, it was me being taken care of by my husband while I battled a lengthy battle with mental health problems; and now, I am his carer.

It took a while to sink in.

I am used to my husband being the strong one. He could run and walk at a fast pace, he could do housework quicker than me, he could put the kids on his shoulders, he could pick me up, and he used to work as a nurse for 48 minimum hours a week.

Now, he can barely walk upstairs, or stand long enough to make a cup of Coffee.

It's painfully heartbreaking to see this happening to him, and even more heartbreaking that he has had to wait for three years for the very services that he worked for, for over 30 years, to get a surveyor out to assess our home for his adaptations which would make him more comfortable.

I understand that there is a lengthy waiting list, but it is the doctor who has told him not to move because the stress of moving could kill him.

Even worse, the doctor has only just decided to write a letter to the disabilities team stating the above and to get him on the priority list.

This should have also been done three years ago.

So far, I have been patient. I provide practical physical and emotional support to my husband every day and night. I help him to get upstairs, get in the bath, prepare meals, get out when he can, and deal with the nightmares and paralysis brought on by the extreme pain; and there are many nights when I don't sleep myself.

Our nurses are exhausted because of their own work; I can relate to that because I spend a lot of time exhausted both mentally and physically too.

The people I try to talk to often ignore my feelings and tell me to get over it because unlike working professionals, I am an unpaid registered carer caring at home for my spouse.

I stand by nurses and paid carers wanting a pay rise, but my carer's allowance which is paid to me weekly is supposed to be there to help me care for my husband; yet, I have to put up with the benefits agency taking it back via my universal credit.

This is not on; it's like saying:

"You don't have to work because you are a full-time stay-at-home carer, but we will punish you if you claim what you need, by reducing your other benefits, making it impossible and stressful for you to fulfill your role."

I also put up with outsiders looking down on me for being a carer when I try to talk about it.

They don't recognize my role, because I don't work in a hospital or other place of care.

Let me tell you something:

At least when you work in a hospital or a care home, you have a team behind you to support you. Yes, it's exhausting, and I do get that. However, I don't have a team behind me supporting my role, I can't reach out to a boss or another carer when things go wrong or when I need to talk.

I stand alone.

I can be strong as a carer for my husband, but there are times when I break down and cry, feeling that nobody understands my feelings, or just feeling generally exhausted.

I can talk to family and friends sometimes, but they do not live near enough to me to be able to understand what I do. I do reach out to other carers online, but being online and standing alone offline are two different things.

I am sure there are other stand-alone family carers out there who are doing the job of caring alone too, who may be able to relate when I say,

"Becoming a carer to someone that you have loved so long, who you have been used to seeing as the strong and healthy one for many years is a massive shock no matter what disability you are dealing with."

There are days when I am strong, and there are days when I am frustrated, angry, sad, fed up, upset, and extremely tired, and I also have days when I don't have time to look after myself.

I haven't had time for myself over Christmas either; most of my time has been spent caring.

I am sure that any carer, whether paid or unpaid can relate to this.

When I was younger, I did some training in a care home; so I know what it is like to be a professional carer. However, being a stay-at-home carer to a spouse or other family member is really difficult because your emotional attachment to that person is different.

This is not a person who is your patient. This is a family member, someone who you have loved for many years with all your heart, and someone who you continue to love for the rest of your life.

I won't let anybody tell me to 'just deal with it,' because I deal with it every day and every night. On top of caring, I deal with cooking, housework, appointments, lifting, bathing, and many other things on a regular basis;

but like professional carers, I am a human being with feelings and needs too.

Most online information is targeted at professional carers, even my carers card's discounts are targeted at paid carers which is unfair because stay-at-home carers who don't work struggle hard with money as we are not salaried and we don't get a wage.

Many people at this point tell me to get a job. However, a job would make it harder for my husband to get his needs met during the day and he would not cope with the housework by himself. A job would make my role as a carer more exhausting because being a carer for me is like having a full-time job with shifts.

I have had to work hard to adjust my routines and try to balance them with caring. I have had to drop many things I love such as going for regular holidays as my husband can no longer travel far by car; we still go occasionally using a coach but this can be expensive, I have had to downgrade my studying and writing time, adjust to long wakeful nights similar to night shifts, adjust to my husbands physical and mental needs in order to get those now different needs met, I don't go out as often as I used to because my husband cannot manage that like he used to, adjust to doing most of the housework because given it is a big house we live in we used to share it, and it is rare that I get to do hobbies. I have also had to adjust my self-care in order to make sure my husband can meet his own self-care needs.

I have had to work harder to become mentally strong, and on top of this, I have to adjust my physical fitness routine in order to stay physically strong to make sure that I can help my husband up when he falls as he is 6ft tall whereas I am quite short.

I constantly find that I have to re-adjust my routines in order to meet both needs, and I am still adjusting emotionally to the shock of becoming a carer to the one person who has spent a very long time caring for me.

It is hard for anyone to find out they are now a carer to a once strong person who they love, but I have the additional difficulty of adjusting to becoming a carer to someone who was once my own carer because of mental illness.

Despite all this, I get up, show up, and continue with my day, because I know that my husband needs me; there are many others who he needs too, but they all walked away because of his difficulties, which makes him feel sad and stigmatized.

I continue to grow in strength, but sometimes I still need someone to say:

"You're doing great."

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