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Wives talk about their experiences

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June, Janice and JoanThis paper considers the unique 'stories' of three wives of men diagnosed with dementia in the Salford area of Greater Manchester based on their experiences and thoughts in relation to the following questions:

  1. At what point in a persons' dementia journey does a wife start to become a carer?
  2. How does the change in role and becoming a 'carer' and 'cared for' effect relationships: s a married couple? or Within the wider family network?
  3. How has the transition to carer affected the physical and emotional health and wellbeing of those taking part?
  4. What three pieces of advice would those taking part give to a wife/spouse of someone recently diagnosed with dementia?

Seven wives/carers of people diagnosed with dementia were invited to meet with the Dementia Quality Lead from Greater Manchester West Mental Health NHS Foundation Trust to take part in a focused discussion group on the points noted above, three of these were from the Salford area of the Trust footprint and four from the Bolton area. The four Bolton wives/carers declined to participate which left the three wives/carers all from the Salford area. The discussion was held in a local dementia resource centre and was two hours in duration.

All three carers gave consent for their stories to be used, and also agreed to be photographed. The accounts were proof read and agreed by the wives/carers prior to submission to ensure that the information was accurate and reflective of the discussions held.

Participants
Joan has been married to her husband for 48 years; he has had a diagnosis of dementia since early 2013 years and also has a diagnosis of bi-polar disorder. Joan has a close knit family but unusually has a 20 year break between her two daughters. During her working life Joan was a care assistant for people at end of life, she feels that this occupation has equipped her in relation to supporting her husband but emphasizes the differing pressure of full time caring for someone you have an emotional bond with, rather than a professional relationship. Joan and her husband are dementia champions in Salford, supporting health and social care including the voluntary sector in relation to service developments and dementia friendly communities.

June was married to her husband for 58 years, her husband died approximately six years ago in a 24 hour care facility, after living a number of years with dementia. June is originally from Australia but has lived in the UK for many years.
June was a district nurse during her working life and also believes that her nursing background was supportive in her caring role in particular recognizing the early symptoms of dementia and ensuring a timely diagnosis. June still plays an active role in relation to supporting people living with dementia and carers in Salford. She runs her own charity which focusses on arts and dementia and in particular co-ordinates a hugely successful weekly singing with dementia group that is attended by 50 – 60 people, this role means she encounters many carers and has a phenomenal insight in relation to the affects of dementia on the individual and their wider family.

Janice has been married for 52 years; her husband has had dementia for several years, but also has a range of physical health problems so considers that she has been his carer prior to the onset of dementia. Janice was a housewife and brought the children up for several years, working part time in school meals provision; this led onto work as a caterer up to her retirement. Janice's has two sons one lives in Texas and the other in the south of England, and one daughter who lives locally and is very supportive. Janice and her husband are also dementia champions in Salford, supporting health and social care including the voluntary sector in relation to service developments and dementia friendly communities.
Janice has also had a brother who had a diagnosis of dementia who has since died.

Feedback from the discussion
At what point in a persons' dementia journey does a wife start to become a carer?

As noted above, Janice did consider herself a 'carer' for her husband prior to his dementia diagnosis. Both June and Joan did state that they did not consider themselves to be their husbands carers at the point of diagnosis but that this changed as the disease progressed and their husbands started to require support with self care and present with increased safety risks, an example of this was provided by June when her husband started to leave the house and get lost (wandering).

All three women were emphatic in that despite the level of support their husbands required, they still consider that their role as a wife more important than that as a carer. Despite June's husband dying some years ago, she strongly reinforced that fact she still considers herself to be his wife and intensely dislikes the term 'widow'. All three ladies noted their wedding vows continuing to be important especially the acknowledgment of commitment even in times of difficulty and ill-health.

In relation to Joan, she reported that she first recognized her role as a carer after her husband required an acute mental health admission and she was given information from the ward staff.

From the discussions held it is very evident that the point when a family member considers themselves to be a carer varies from person to person, however health and social care professionals refer to 'carers' often from the outset of a diagnosis. It may be that for some people at the point of diagnosis the role is rather that of and 'enabler' than a 'carer'.

How does the change in role and becoming a 'carer' and 'cared for' effect relationships:

  • As a married couple?
  • Within the wider family network?

All three ladies stated that the changes in their husbands' personality have had a significant impact on their relationships. Janice felt that her husband needed much more reassurance, and comfort as he often becomes frightened, she also shared the fact that her husband often becomes frustrated and irritable. In relation to Joan, she described her husbands' often distressing experience of mood swings which have resulted in his admission to hospital in the past. Two out of the three ladies shared the fact that their husbands often display jealous traits that are out of character and unfounded, and both ladies thought that they were the only one to experience this situation, having never shared this with anyone before.

In relation to Joan and Janice, there was consensus that as their husbands' dementia progressed, more and more of the roles undertaken by their husbands within the home had now devolved to them. Contrary to this, June reported that she had always carried out all the household tasks due to the nature of her husbands occupation and working away initially in the merchant navy then latterly in business for prolonged periods, so this felt less burdensome to her as her husbands skills started to diminish.

All three ladies reported how distressing they found not being able to have 'normal conversations' with their husbands, from Joan's perspective her husband now no longer initiates conversations. Janice also reflected on missing some of the activities they used to do together such as walking and dancing. June reported it being particularly difficult when as her husband deteriorated and no longer recognized her.

In relation to family networks, there was an acknowledgement from the ladies of often feeling that they did not want to burden others within the family, and also that family members differ in their own approach to dementia and ability to cope with their family situation.

How has the transition to carer affected the physical and emotional health and wellbeing of those taking part?

All three carers reported the relentless stress of caring and emphasized it being a 24 hours a day, 365 days a year responsibility. June also reflected on the fact that due to the nature of the disease, this can be the case for a number of years, in June's case 10 years.

The ladies noted that from their observations of male carers supporting their wives with dementia, they think that predominantly, women tend to be more resilient and cope better in particular with the deterioration of self care skills.

Both June and Joan did mention a time when they had been seriously physically unwell during caring for their husbands which now on reflection they feel was partly attributed to the stress of caring for their husbands.

In relation to stress all three carers did talk about at times feeling stressed, isolated and embarrassed in their own communities especially in relation to their husbands' presentation in public areas. In Joan's case this had been exacerbated on a number of occasions by the general public being unsympathetic and in some cases rude in their response to her husbands' behaviour.

In relation to coping strategies, Janice explained that often laughter gets you through and reported that being able to see the funny side of her husbands' illness can often diffuse the stress felt both by her and her husband; she also stressed the importance of time out to enjoy things alone and recharge her batteries. Joan explained that she has recently bought a dog which is giving her and her husband some common ground and shared activity/responsibility taking it for walks, she also takes comfort from sharing her experiences and talking to other carers in the 'same boat' as her. June stressed the importance of having a contingency plan in times of crisis and advocated that the carers health and wellbeing needs are a critical element of the partnership in order for them to continue to support the person living with dementia.

What three pieces of advice would those taking part give to a wife/spouse of someone recently diagnosed with dementia?

From June's perspective, her advice would be:

  1. Learn to be selfish, your needs as a carer are important.
  2. Look after yourself, if you become ill the results can be catastrophic for everyone.
  3. Don't argue, accept that part of the condition is misperception and misinterpretation which impacts on beliefs and thought processes.

From Joan's perspective, her advice would be:

  1. Try not to show your feelings to the person you care for particularly if you are distressed, upset or angry. This only upsets the person you care for and they often cannot understand or remember what they have said and done to upset or offend you.
  2. Talk to people who understand about your feelings and situation such as other carers, the value of peer support from people who understand and have similar experiences is essential.
  3. Take one day at a time.

From Janice's perspective, her advice would be:

  1. Don't be frightened to ask and accept help when you are struggling, find out what is available to improve your life and give help and support.
  2. Make time for yourself, keep up your own interests and have some time doing things you enjoy.
  3. A sense of humour is essential and can diffuse tense situation when someone with dementia behaves in a way that is uncharacteristic or difficult to understand.

Conclusion

The discussion gave an insight into the often distressing side of dementia and its sometimes negative impact on lifelong relationships and resilience between husbands with dementia and their wives. Despite this all three ladies reported feeling that their husbands' illness had in essence brought them closer together, the love, tenderness and devotion shone out of all three of them throughout the discussion, and I felt immensely privileged that they were willing to share their stories and spend some of their clearly very precious time with me.

Gillian Drummond, Dementia Quality Lead – Greater Manchester West Mental Health NHS Foundation Trust.

Tags: carers, family, relationships Written 2014-11-05

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