Supporting a parent with dementia
When a parent is diagnosed with dementia, the effects of the illness become all consuming. The feeling of duty overtakes you and you try to become this practical person who feels the need to provide care for their parent. In my case, my Dad is the primary carer to my mum, who has Alzheimer’s, but I feel it is my duty to support him in every way I can.
Mum’s Alzheimer’s was diagnosed through an MRI scan and her GP informed us about this result. Immediately, he set about putting us in touch with various organisations with experience and knowledge about this condition. It is difficult to process all the information at once and it does not prepare you for the emotional roller coaster you are about to undertake. My Dad stayed in denial for the first four to five years hoping Mum would get better, but he has now finally come to terms with the fact she will not. His life revolves around tending to her every need and he is adamant that she should remain at home.
The role I play in supporting my parents
My support is mainly to ensure that Dad is coping and try to relieve any pressures where I can. So I shop and cook when he needs it, or sort out any paperwork, which now too confusing him. I take them to hospital appointments, so I am aware of what treatments are going on, as they are both forgetful and can’t remember what they have been told by consultants. On many occasions, the pressure becomes too much and Dad and I have a meltdown, which sort of helps – it’s like a release; then you pick yourself up and carry on.
For us, the least amount of outside help is best, as my parents don’t like strangers in their house. My Dad’s choice is to manage on his own and that decision has caused many arguments between us. But it was the right decision for him, as he does cope and is now managing her care very well. My Dad is typical of his generation – stoic, stubborn and believes he can manage on his own. The only thing I can do is to arrange practical outside help and say to him that when he feels unable to cope anymore I have people in place and ready to step in.
Getting support and guidance
The Alzheimer’s Society has been an invaluable help. They provided a book called “Who cares for the Carer” and I have tried to understand why it so important to take a step back from intervening and taking control.
In my Dad’s eyes, I am still his little girl and essentially “what do I know?” The book gives so much advice on how to deal with each stage of the condition and more importantly practical advice on how to handle Mum when she kicks or spits or ignores you. We have just learnt to accept it and not fight back. We have learnt to stay calm, when sometimes you just want to shout at her. Both of us have learnt the hard way that if you do shout back the situation becomes inflamed and we all end up crying and miserable. There is a lot of support and advice out there which we can access either through our GPs, support organisations and the internet. Remember you are not on your own – there are many more people going through the same situations.
My advice to families going through a similar experience
Once you have a diagnosis from the doctor about this condition, you can start to plan long-term care. Most families want to keep their loved ones at home for as long as possible, maybe employing carers to help with the needs of the patient. Putting together a care plan is not always easy and there are a lot of decisions to be made. All care plans are patient-centred, so families have the right to make choices for their parent to ensure their needs are met.
Choosing a carer, or indeed a care home, can be challenging if you have never had experience or a recommendation from friends. Once you had chosen what do, it is important to find a carer and nursing staff who see their roles as vocational, with a compassionate and caring nature.
As a carer who is both an unpaid family carer and paid professional, I am fully aware of the strain it puts on families when they place a parent into care. Guilt is the major emotion, but reassurance from care staff tries to eliminate this, as sometimes there is no choice. Not everyone can manage to support their parents at home, even with carers coming in. And sadly, some older people have no one and the choice is taken away.
As a professional, I have seen the situation from both sides and I treat my care home residents with the utmost respect, exactly the same way that I care for my parents. There is no difference between the two. I feel that you are either one of life’s carers or you are not. You are born into it. Professional carers will always say “You don’t do this job for the money, you just love doing it”. To see happy residents or parents in turn makes a carer happy.
The decisions we make regarding care are guided by wanting to manage a loved one’s condition as best we can. The professionals are here to advice and guide us. At the end of the day, we all have to heed the advice given in the patient’s best interest to get the best possible outcome. Experience has taught me that you need to talk and be open to as many people who have been through this. Knowledge is a powerful tool when making these decisions. Dad and I sit and sort out problems together by talking them through, but it’s Dad’s decision at the end of the day and this is paramount. I have to stand back as a daughter and allow him to continue as the husband caring for his wife.
My final reflections
Everyday is different – sometimes good and sometimes bad. Life throws many challenges at us and most of us will have a coping mechanism to deal with these. I go to my happy place on bad days and take some time out – so does my Dad. He will go into the garage and have a good cry in private. I go to Starbucks and cry over a Hazelnut Mocha!
I have lost my mum and my dad has lost his wife to this evil condition. We won’t be able to go out for lunch, clothes shopping or take any more holidays. We will never get all that back. But we continue to provide the best care we can to make her quality of life reflect the love that she has always showed us.
Lynne Lambert, is a carer in every sense of the word. In her professional life,she works in a care home and provides domiciliary care and in her private life she provides care to her mother who has Dementia and Breast Cancer. Lynne is a SuperCarer Ambassador. SuperCarers is a personal service where families can find vetted, reliable and compassionate carers. It give families the tools and support to manage the scheduling, logistics and payment of care directly with a carer, bypassing the high overhead costs of agency middlemen.
