In sickness and in health, till death us do part…
We married in 1975, I was 18 and he was 28. Both of us worked very hard: full time, part time and overtime. I went to university and we had 2 children a girl and then a boy 16 years later. We worked even harder then, sharing household chores and bringing up our family. And we still managed to love each other, maintain our sense of humour, our fidelity and our sanity. We were also lucky enough to keep healthy and I was able to assist with caring for my mum, then 6 years later after she had died I gave up a professional job to care for my dad, who then also died.
Good things don’t last forever. Around 7 years ago, at 71 my husband suffered a stroke. It affected his left side, his cognition, mobility, mood and short term memory… but more importantly his pride and dignity. He moved out of our bedroom into a spare bedroom and he stopped kissing me and spoke less. If he did speak it was with irritability and negativity. Gradually I did more and more and my role of wife changed.
My husband is ‘Mr. No Change’…
My husband won’t let me help him wash or dress. An occupational therapist came to show him how to get into the bath for a shower using a bath board and handle. But no, he was too proud to do it that way and no one can tell him what to do.
Instead he attempts a strip wash in the sink throwing water over his head and missing every time. Water damage occurred to the plaster beneath the bathroom and to the flooring before I decided to put rolled-up towels around the walls and sink. I wring them out, dry them out and replace them daily. I steal his dirty clothes from his room while he washes, emptying the pockets then getting them in my washer post haste. Then I set out clean clothes and check he’s not wet the bed in the night. When he buttons his shirt up wrong I point it out. Sometimes he lets me redo the buttons, other times he shouts at me to leave him the **** alone. He’s angry that he’s no longer 28 and has changed into an ‘old codger’ as he calls himself.
My husband makes his own breakfast. I buy him gluten free muesli gluten free bread, dried prunes, walnuts, apricots, blueberries and yogurt because this is what he enjoys. I cook gluten free meals from scratch every night. He flatly refuses to eat anything processed or red meat. I don’t eat with him as I can’t settle because sometimes he aspirates then sneezes food out from his nose. On occasions the meal on his lap slides off, or he gets up forgetting it’s there, or the sauce/gravy trickles onto the settee… always on the left side. It would be much easier if he would eat at a table.
At first my husband refused to use a walking stick, an electric scooter or a blister pack for his medication. There was a lot of shouting and cussing, but he’s now accepted 2 out of the three. The scooter our daughter kindly got him has never moved out of the garage and the battery never charged. He says it makes him feel too much like an old codger. The walking stick has become an extension of my husband…a godsend, except for when he pokes, prods and rattles things with it. The blister pack has helped us both. Before, I could not oversee his medication; tablets were stashed everywhere.
I got us both bus passes, they too have been a godsend. My husband loves to get on a bus and travel his familiar, local journey for a coffee. He likes to ‘people watch’ and is a sociable man, sometimes a bit too much so, gesturing to strangers with his stick or a ‘thumbs up’ hoping they’ll engage.
My husband has heart conditions: atrial fibrillation and aortic stenosis and there’s evidence he’s has small stokes (TIA’s). A few times when he’s been out he’s collapsed and I have had to get him to A&E. I help with all appointments and correspondence. He goes on the bus to pay bills at the post office. My husband has anxiety about money so won’t entertain standing orders or granting me power of attorney.
When he’s at home alone he enjoys to watch darts and snooker on TV but can soon become restless and bored if I’m not around, then he is likely to tinker. He used to be a good handyman and a self taught engineer… but no more! I have had to call an emergency plumber out more than once and the damage he has done to our home, trying to fix things, is too great a list here. I always put things right and do the housework, gardening, shopping, cooking, laundry, decorating…the lot. I have managed to do it relatively comfortably up until about 6 months ago.
The ‘Doing Thing’ got broken…
Things are great when you’re healthy. You can do things for others, as well as for yourself, if you have the nature and of course the love. Around 6 month’s ago I developed a nasty chest infection, followed by shingles, followed by a strange, unfortunate accident on Christmas day. I forgot to mention that I do a bit of other caring on the side ha, ha. Our daughter has 4 children the eldest is 21 and he has cerebral palsy (right side hemiplegia). My daughter has MNP a blood condition – I take her to appointments.
My parents were narcissists…
When you are an only child like I was, with parents that were both narcissists, you have to behave, be a good girl and do as you are told. Not conforming meant love being removed, guilt trips, gas lighting, belittling and disapproval. I was manipulated from birth, into pleasing and caring for others, at the expense of loving and valuing myself. That is how I became a ‘compulsive carer’, it was not by choice. My epiphany came one day in 1988 when I was sat in a Social Work lecture hall at M/C Uni. I suddenly understood why I was so eager to leave home and marry the first man that had asked me. I escaped my parents but still have never completely escaped my past self. I was just very lucky that the man I married was a good man and still is.
Glass Half full…
Caring is much easier when you are feeling both physically and mentally well. By keeping busy and not dwelling on things also helps. I try to be positive and not drag myself down by self pity, ‘what ifs’ and over thinking things. When I do start feeling down, I go for a walk, I have a special 3 ½ mile route. I even do it when it’s raining.
I have protected myself from guilt by becoming the ’Doing Thing’. The more I do the more I love and value myself, I am as good as what I do, not for who I am. Even though I understand it I can’t change. I am Mrs No Change just as my husband is Mr No Change…We are Mr & Mrs No Change!
My husband doesn’t want help from ‘outsiders’, but there may come a point in time when it might have to happen…for him or me.
I would like help with Welfare Rights; but know my husband would have to read and sign any forms. I also know full well he would never agree to that. He always uses denial and confabulates to offset any change from happening. He presents as independent but isn’t, so he probably wouldn’t qualify for anything anyway. He still has mental capacity but we don’t have a proper diagnosis for his mental challenges. I am fairy sure it is Multi-infarct Dementia. But the ‘D’ word is never spoken about because for him it holds a terrible stigma.
It would be fantastic if I could pay for a cleaner once or twice a week; and for someone to come and prep from scratch gluten free meals every evening…but I can’t afford that. So I will just carry on.
We have a dear friend who lives in North Devon and we would love to visit her. My husband and I used to visit 2 or 3 times a year. I can’t take my husband now, it’s too difficult on my own. What once was a joy is now just a big stress. I thought about taking my husband to the Salfordian at Southport for a break. It was a hotel for older people in Salford and their carers. I discovered it was closed down 2 months ago by their council.
What can I say other than…
Look after your health first and foremost. We generally all help out our friends, neighbours and family, it is natural to do so, unless you are a narcissist that is… and there’s plenty of them about. They usually present as lovely, charismatic people but nurse a fragile ego, put their needs first, are control freaks and are never wrong. Caring isn’t for everyone. I say: ‘Do it with a good heart or don’t bother’ otherwise it won’t be in anyone’s best interest.
We go back in time…
Every evening I stop being a ‘Doing thing’ and revert back to being a wife. I am 18 again and my husband is back to being 28 and how he used to be. Sometimes he will touch me on the hand and say ‘you’re a good girl’. Then we turn on the TV for Sounds of the 70’s and listen to the music from that era when we first met.
