Helping families get past the missing socks.

Placing someone into residential care can be a traumatic experience for many families. Letting go and allowing other people to care for a loved one can be accompanied by feelings of grief, even anger.

By Melva Nicholson

Your loved one is diagnosed with dementia. You have coped with the memory loss, incontinence, the wandering, the misplacement of objects, the repetitive questions and the loss of the person that s/ he once was.

You have finally accepted (following pressure from your Family, GP and friends) that your loved one needs permanent care because you can no longer manage this behaviour which is stressful for you and your family. By placing your loved one in residential care, you have conceded s/ he will be cared for 24 hours a day, seven days a week.

It is difficult to "give" your loved one to a stranger--a person who doesn't know their little habits, who doesn't know the person they once were, who hasn't shared a lifetime with this person, a person who was once the head of the household, the wage earner, the gardener, the cook, the home maker. Will they care for them as you have? Will they really understand them? Such questions mark the beginning of a grief process. The way you cope is to visit your loved one as much as you can, bringing the special goodies they like and counting the socks and laundry to ensure they haven't gone missing.

You get angry--the socks are missing, he hasn't got his favourite jumper on, he hasn't got the right trousers on, he hasn't got the right socks on! You get angry at the caregiver, angry at the nurse in charge, angry at the cleaner. You ask to see the manager--you ask to go to the laundry and check the clothing--you want to make a complaint!

But I believe there are other, more important questions you could ask the staff, questions that will give you the answers you really need about the quality of care your loved one is receiving. Is s/he being cared for? Yes. Is s/he being showered? Yes. Is s/he being fed? Yes. Is s/he complaining? No. Is s/he upset because the socks don't match the trousers? No. In fact, do they know who you are? No. Maybe this is what you are really upset about.

Having worked with people with dementia for 14 years, I see this kind of scenario constantly. Most rest-home and dementia unit staff understand and appreciate that this anger and these questions show the grief process has begun. You are angry at having to let go of your loved one and give him/her to people who don't know their little habits, likes and dislikes, and who haven't spent a lifetime of love, travel, wining, dining and raising a family together.

Your loved one would have hated to know they would spend their last months/weeks/days in a rest-home or hospital and would even be happy there, for their past life is now lost and family names have been forgotten. You thought you would look after each other for ever--see the golden years out together--enjoy the retirement years together.

I used to think all staff needed to do was to help families through this "grief process." Now I understand that the feelings run deeper than this and the grief is really about the disempowerment of love. I have heard people say: "The staff know more about what he eats for breakfast than I do"; "The staff know when to shower him to cause the least agitation"; "The staff know how to calm him"; "He winks at the staff, he laughs with them"; "If we go out, he wants to 'go home'--back to the facility"; "He relates to the staff". These sorts of comments can be difficult to deal with. What advice can I give?

Making visiting times special

What I suggest to families is that they offer as much support and love to their relative or spouse as they can. I encourage them to be with their loved one as much as possible, to go on outings, to make their visiting times special. Forget about looking for matching socks. Spend this precious time together instead. That will give you the memories you need in the years to come.

And when you leave the facility after your visit, don't be disheartened that s/he goes straight to a caregiver and gives her a smile or wave and forgets who the "nice lady was who just visited." Be happy that s/he is in good care. Remind yourself that putting your loved one into care does not indicate you are uncaring. In fact, the opposite is true. You have shown how caring and loving you are by entrusting your loved one to those who are trained to care. They really do care and they realise the sacrifice you have made. Rather than feeling disempowered, let them empower you through the love they have for your loved one.

This article is dedicated to *Patricia (*not her real name), a loving and caring wife who has entrusted her beloved husband to the care of our staff.

Melva Nicholson, RN, manages Beechworth Home and Hospital in Albany, Auckland.

A manager of a dementia unit laments the lack of funding and training available for nurses and caregivers working in this specialised field. With increased resources, better care could be provided for those in most need of it.

By Anne Manchester

Although dementia units require two-thirds more staffing than rest-homes, they are not funded any differently, says Beechworth Home and Hospital manager Melva Nicholson. And with more funding, more activities could be provided for the residents and more appropriately trained staff could be employed.

"We give those in our dementia unit the best care we can, but we could do so much better if we had the resources and people we really need." Nicholson has been manger at Beechworth since October 2005. Before then she spent 12 years as manager of nursing services at Auckland's Ranfurly War Veterans' Home and Hospital. There she established a 24-bed dementia unit, after observing a number of units in Australia. At Beechworth, a privately owned facility, the 17-bed, stage-three dementia secure unit is part of the 60-bed rest-home, and adjacent to the 63-bed hospital. In addition to caregivers, there is enrolled nurse cover in the rest-home and dementia unit seven days a week, as well as a part-time registered nurse (RN) care co-ordinator. Staffing in the hospital wing includes two RNs on site at all times.

Over the last 15 months, Nicholson has worked hard to establish better systems at Beechworth, including human resources, communication and employment procedures. She is pleased the use of bureau staff is decreasing, as more permanent and experienced staff join the team. Nicholson has also worked closely with families, ensuring their concerns and complaints are heard and dealt with immediately. "Our facility is now totally full and we are well staffed. I am keen to explore ways of giving families who have loved ones in the dementia unit more support and plan on establishing regular support meetings later this year. Families realty benefit from being able to share their problems with others in similar situations."

Nicholson is careful who she employs in the dementia unit, realising that not all caregivers have the right personalities to cope with the mentally and physically demanding work. "We need quiet, compassionate people working in this area, people who understand dementia and people who are not too task-orientated. It's no good expecting to have everyone up, showered and dressed by 10am, because that just doesn't work with confused people. The only thing that is regular here are the meals. The rest of the time, caregivers need to be very flexible in their approach. Some people may not want to get dressed or they will insist on putting on several Layers of clothing. You have to learn to live with these things. Toileting and showering are more constant tasks than in the rest-home."

Nicholson would like to see many more courses on dementia available for nurses and caregivers. ALL her caregivers in the unit go through the ACE (Aged-Care Education) dementia programme, but much more training is needed. Dementia also presents itself throughout the facility, particularly in the hospital wing. "Dementia is an increasingly prevalent disease, but there is little education available. Finding people with experience can be a real challenge. Some caregivers believe if they can care for children, they will be able to care for people with dementia. But these people are adults, not children. They need to be treated and spoken to as adults. When they ask me questions like 'Why am I here?' and 'Where is my husband?' I give truthful, realistic answers. You must not lie to these people."

Nicholson has organised two education sessions for relatives of those with dementia, run by an educator from Age Concern. One was on the use of restraints; the other on how relatives can care for themselves. Nicholson is aware some relatives suffer a lot of guilt and grief at having to place their loved ones in care. "Some will take them home again to see if they can manage, but often they will find they are more disorientated at home than at the unit. Residents get very familiar with the staff here; they see the same faces every day and feet safe with us. Often they relate to the staff better than to their own families, because that is who they now know. This can be very hard for families to accept. Some families find that, over time, even taking someone out for coffee may not be successful, as the resident will just want to get back to the security of the unit. I suggest they simply spend time in the grounds here. Some will bring a thermos with them and just enjoy sitting out in our gardens with their loved one.

"I also advise families not to bring anything valuable or special into the unit, as other residents will just pick them up and wander off with them. Photo albums are good, however, as so many people cannot remember what happened during their lifetimes. That's a helpful prompt for the staff too."

Most families will eventually gain confidence in the staff's ability to care for their loved one, says Nicholson. "They mostly get past the issue of missing socks and do all they can to make their visits meaningful This is satisfying to the staff as well as the residents."