GUILT IS EATING AWAY AT ME

Q

My husband has a progressive neurological disease called Huntington’s. He started experiencing symptoms in 2008 and was diagnosed in 2012.

He’s been unable to work since 2009 and I couldn’t keep up the bond payments for our house so we sold it and moved in with my mother, who’s now 81.

The money from the sale of our house was used to pay off our debt, buy a car and pay for our son’s university studies. There was nothing left.

My husband doesn’t need fulltime care yet but he does need someone around to help him at mealtimes and in case he falls as his coordination is poor.

My mom is my hero – without her I don’t know what I would’ve done. Not only did she provide us with a roof over our heads, she also takes care of my husband during the day and runs the household so I can work.

She never complains but I can see she’s getting tired and that it’s becoming increasingly difficult for her to do what she does every day. Also, she can’t leave the house unless I take time off work.

When I look at my tired mom I’m consumed with guilt. My sister also blames me for “misusing” our mother and it’s soured our relationship.

Getting outside care for my husband isn’t possible as it’s expensive and he also won’t accept it as he doesn’t cope well with change. The only way to relieve the pressure on my mom is for me to stop working.

My son is willing to take care of us when the time comes. He’s building a good career and plans to buy a house for himself and for us.

But I want him to enjoy his young life and the money he’s earning. I don’t want him to be burdened by the financial responsibility of taking care of his parents.

My husband wants me at home (he loved lockdown as it meant I didn’t go to work) but I love my job – it makes me feel whole.

But then I feel guilty about putting myself before my husband, my elderly mom and my son. I just feel guilty about everything! Sandra, email

A

Huntington’s disease is a rare progressive condition in which nerve cells in the brain break down over time. There’s no cure and it results in cognitive and psychiatric symptoms and also affects the mobility of the person as they lose coordination.

It’s usually the result of a recessive gene and onset of symptoms happens in a person’s thirties or forties.

It’s simply a matter of bad luck and neither of you is responsible for the situation in which you find yourselves today.

Your mom has done what most mothers would do, which is to help you as much as she can.

She’s clearly a loving mom, and you haven’t misused her as she’s done what she’s done willingly. But you’re correct that at her age it’s bound to become too much for her.

But you can’t give up your job – not only is it a source of income, it’s also important to you and gives you enjoyment and a sense of purpose.

Of course you want your son to enjoy his life, but it sounds as if he’s aware that he has you to thank for the fact that he can build his career because you paid for his studies.

So allow him to help you now. Perhaps he could pay for a helper a few days a week.

Contact your nearest hospice and discuss the possibility of your husband spending a day or two there every week so your mother can have a bit of a break and visit her friends if she likes.

Your husband might also find he makes new friends and enjoys connecting with other people when he visits the hospice.