Following an article on dementia in CPSA News, William Griffiths wrote to CPSA to share his experiences caring for his wife. Here is what he wrote.
I have been the carer of a dementia-suffering wife for the last three years. To say it has been a learning curve would be an understatement. Living on a new planet would be more accurate.
While there is an abundance of caring and dedicated external help and “textbook” guidance available from a variety of sources such as community dementia groups, community nurses, Anglicare, Catholic Care etc, nothing or no-one can replace the love of a spouse.
Rule number one is to remember, no matter how hard your job as a carer becomes, it is not your spouse’s fault. It’s the disease taking over her mind. She has no control over her actions. She is a product of the dementia disease.
To be honest, there are times when I feel like packing my bags and walking away. Other times, I get so angry and frustrated I feel like punching the walls.
But just as the critical moment reaches a crescendo, I stop and think that this woman is solely dependent on me and my actions. I have to keep it together for her. It is not about me. It is not about us, it is all about her.
She may not be the same woman who I married 51 years ago. While she is losing her memory, motivation and dreams, she still has feelings. And it is these feelings we, as carers must care for and caress.
We must listen without expecting the same responses we previously got. Don’t expect her to remember where you just took her out for dinner, or worse, sadly, the names of her children. Don’t expect her to remember the past. The disease has taken over that part of her memory.
As for your own personal help, do as I did and ask your local club if they would assist you in starting a group of dementia carers where you can each talk about your own fears, worries, and anxiety in a non-judgemental environment.
Our local club provides my group with a room, guest speakers, publicity, and even their own welfare staff. It is a truly welcoming environment for this normally unsociable person. Just being able to talk to others in your same situation, rather than listening to caring “qualified” outsiders living a normal life helps.
Yes, medical specialists offer great advice, but they don’t live and care for a patient 24/7. It’s hard for a man to express his feelings but in a group such as mine, it’s almost expected, and there are some pretty tough and well experienced men and women carers in this group who willingly open up their hearts and who also express their feelings.
Of course, both carers and their partners come to the group. It doesn’t get much better than that. We are all in the same band playing the same song. There are no stars in this group.
The first step is reaching out for this help. Whatever you’ve done in your life to this point doesn’t matter. Dementia doesn’t care about your experience, qualifications, income or postcode. The job description of dementia is to destroy, and it’s bloody good at it.
My last suggestion is to work on your wife’s feelings. Give her a cuddle and tell her you love her. If passing in the hallway, give her a cuddle and tell her again how much you love her and compliment her for even the smallest things she does. Thank her for the little things she does to try and help you. Don’t expect her to remember – you will.
Tell her she looks nice even when in her dressing gown and even if her hair is messed up. She may forget many things, but I’ve yet to meet a woman (and I’m related to many of them) who doesn’t enjoy or remember a cuddle and being told she is loved. And that’s something outside professionals can’t do.
And although your wife may forget her wedding anniversary, I ask you to remember and practice those six words you said a long time ago: for better or worse, for richer or poorer, in sickness and in health.
Now go find or start that carers group. I’m going to cuddle my wife and tell her I love her.
For information about carer support services in your area: call 1800 422 737 or click here.