6. Relatives to persons with severe dementia

A newly diagnosed dementia at a member of a family is in itself abundant to deal with for the relatives – but as the disease develops, new things come to mind: Do we need help, do we need to stop activities, and do we need to consider moving the family member to a nursing home? It becomes harder and harder to deal with when of the disease develop and the more it affect the person. He / she finds it more difficult to cope with ordinary everyday things, which the relative then has to help with, it could be eating, putting on clothes, finding your way around, etc. Dementia is also called the relatives’ illness, because the relatives have a large and difficult tasks related to the disease.

The relatives

There are many reasons why relatives need to take care of themselves. Primarily, studies show that relatives suffer from health disadvantages by being care giver for a person with dementia. They simply have a greater risk than others of becoming ill themselves. In addition, studies also show that when relatives of people with dementia are stressed, it also affects the person with dementia. Fortunately, there are also many positive aspects to caring for a family member with dementia. It is just important that there is a balance from the start, so that you as a relative do not get ill yourself.

As a relative, you may be in a dilemma between having to fulfill your loved one’s wishes and needs, and respecting your own boundaries. It can e.g. be boundary- exceeding to have to help your parent or spouse with the personal hygiene, while it can be difficult to say no to the task.

You need someone who listens throughout the process. Family and friends may have a hard time dealing with the disease in the long run. Many relatives find that their family and friends do not fully understand their situation. Others experience that the social circle begins to distance themselves when the dementia disease is very advanced.

Therefore, it can be a great support with professional help and it can be beneficial to meet others who are in a similar situation in e.g. relatives groups. As a relative, you should never be alone in the responsibility of a person with dementia, it is simply too big a task. The ideal is to have friends, family and professionals who can help with the practical chores, who can lift some of the responsibility and with whom you can talk about the challenges.

Some relatives feel guilty when they spend time for themselves. Nevertheless, it benefits no one to feel guilty about doing something for himself or herself. On the other hand, it gives extra energy to continue to be able to help.

The Alzheimer’s Association gives some advice on how to get a little better through the development of the disease.

• Accept help.
Throughout the process, the relative has gradually to adjust his / her behavior – because what the dementia-affected family member could do yesterday, he / she may not be able to do today. Now there have to be another way of doing things. Recognize the development of the disease and start organizing the support accordingly. For example, in some areas you may need to ally yourself with friends, family, or home care. The latter can be boundary- exceeding, and in that case, it may be a good idea to build trust between the carer, the citizen with dementia and the relatives.

• Make a future power of attorney.
In Denmark, it has been possible to make this power of attorney since 1 September 2017. The intention is that the citizen can give one or more persons the right to act on their behalf sometime in the future should the need arise. It only comes into force if the citizen can no longer look after his own interests, due to illness or cognitive impairment. This power of attorney is legally binding.
An everyday life with dementia is full of dilemmas and considerations. You have plenty to think about, but it can give you peace of mind if you are sure that the future is legally in order. It does not solve all problems, but it does ensure that one has some self-determination over who should help one with the practical and financial things later on.

• Write a Care Will
In Denmark, it is possible to fill in a care will. This way, you have an opportunity to express your wishes for the future, if at some point you become unable to express yourself. The Care Will is a guide for the municipality’s staff when they have to plan the care, nursing and housing situation. According to the law of Social Services, the municipality must as far as possible respect this guide. In addition to helping the staff to provide a more dignified care, which is based on the wishes of the person, it is also a help to the next of kin to make difficult decisions. The Care Will must be kept at the home of the person with dementia or with the relatives.
It is a good thing for everyone to make a care statement. The Care Will helps to tell the staff at the nursing home what wishes the person have if he/ she are to live there one day. As far as possible, according to the law, one’s wishes must be taken into account if, for example, one prefers to sleep long in the morning. As a couple, you can each make your own Care Will and have some good talks about what is important to you.

• Talk to others and each other.
Dementia is a progressive disease, and just as one thinks, one has gotten used to a level it goes down. It can be difficult, so talk to each other and others about what it is that is difficult and what can be done to help. Consider being with others in the same situation. It can become harder and harder to participate in ordinary activities for both the person with dementia and for the relative. As a rule, you can find activities that you can still part take in. It is often in community with other people with dementia, relatives or groups of married couples.

• Stick to activities
Stick to the activities, but consider how much you can handle. When you have dementia, it is important throughout your life to stay physically active – go for a walk, or go out cycling and running, if that is an option. Get some good experiences into everyday life. It can be social communities, such as walks with others in the same situation.

Nursing home

The decision to move to a nursing home can be very difficult to make. For the one who has to move, it can be associated with fear of losing his independence. For a relative, it can be a big step to be involved in deciding that your parent, spouse or cohabitant will have to move ‘from home’. Many relatives, especially spouses, experience guilt that they no longer are able to keep their loved ones with dementia at home. Thus, it is a good idea to prepare for the possibility of moving to a nursing home, long before it is even relevant. Consider in what future situations it would be better to live in a nursing home rather than living in your own home. If e.g. dementia has become so advanced that it is difficult to maintain good health, proper hygiene and both the person with dementia and the relatives are very burdened by the situation, it may be appropriate to move into a nursing home where the necessary help and care is available. Moving to a nursing home usually means that the relatives are relieved of a number of worries and work tasks and this gives more profit to a pleasant time with the person with dementia.
It is a particularly demanding task to provide care and attention to people with dementia. Therefore, it is alpha and omega that the staff is trained for and has knowledge of the various dementia diseases and the special requirements for care.
For a relative, it therefore can be nice to have insight into the staff’s educational background and their attitudes to the work. Who is employed at the nursing home and how is the staff distribution between day, evening and night shifts. It can also be good to know about the staff’s socializing and daily contact with the residents.
Moving into a nursing home can be difficult. For a relative, the transition where the person with dementia moves from your own home to a nursing home can also be a difficult time, which can be associated with ambivalent feelings of both grief and relief. A good start can mean a lot for how the person with dementia will thrive and how the relationship between the care staff, the resident and the relatives will be.

Nursing home dialogue

In Denmark, a nursing home dialogue is quite common and a good opportunity to reconcile expectations. The meeting is held before moving in, between the person who is to move in at the nursing home, the relatives, and the management of the nursing home, the professionals who know the citizens and the professionals who in future will be caregivers.
A nursing home dialogue is a good tool for clarifying expectations and getting to know each other.
If the person to move still can make decisions, it is a good starting point to help him / her formulate his / her wishes. If this is no longer possible, you as a relative can describe how you think the person best will thrive in their everyday life and tell about their life story. It can be a great help to the staff in the organization of care, so that they meet the new resident’s, habits, wishes and needs to the greatest extent possible. It also gives staff a better opportunity to take into account the new resident and the relatives’ situation, which can help prevent conflicts.

A new everyday life

Everyday life in a nursing home is different from what you are used to from your own home. It is both a private home and a workplace, where the needs of other residents also must be taken into account. The care has its own set of rules and routines, and everyday life can have a more institutionalized character with shared meal times, etc., than you are used to from home. All of this creates a special setting that can take time to get used to as a relative. As a relative, you are also often tired and worn out after a long period of care at home, and it can be difficult to get used to the fact that your loved ones have to live somewhere else and are cared for by other people.

Many people experience grief over having lost the person they have shared their daily lives with – perhaps for many, many years – and often guilt over having failed their loved one. The fact that others have taken over the care can also give feelings of powerlessness and frustration, which can affect the relationship with the staff. In some cases, the next of kin experiences jealousy towards the caregivers when one’s loved ones show greater joy towards them than towards oneself.

For employees and managers, the nursing home is a workplace, and they rely largely on a professional understanding of the work, which is determined by the workplace’s values, guidelines, history, finances, etc. Situations also arise that are emotional for both the staff and the management, because there can also be both professional and personal values at stake for them. Through their daily contact, they have built personal relationships with the residents. They can e.g. be frustrated at lack of resources and not having enough time to provide the care they want. The meeting between nursing staff and relatives can therefore be characterized by different preconditions, expectations and personal attitudes. It is therefore important to have mutual knowledge about each other’s emotional experiences and situation in order to promote cooperation and mutual communication. That the staff show respect for the fact that part of their work takes place in a private home and that they have knowledge of the family’s life history and situation is essential. That you also as a relative have knowledge of daily routines and opportunities in the new environment, and that you show openness and understanding of the staff’s professionalism and work is important. The different perspectives in relation to the person with dementia can give rise to conflicts. The relatives want the very best for the person with dementia, but it may collide with the professionally based angle. Here are a few authentic examples of disagreements between staff and relatives.

• A citizen has narrowing of the esophagus after cancer surgery and is prescribed a soft diet. Relatives do not understand this and out of misunderstood care choose to give the citizen ice cream with almond chips.
• Staff must not give a non-prescription medication to a resident. Relatives want to give the citizen over-the-counter medication that does not harmonize with the residents other medication and do not understand that the staff must not dose and give the over-the-counter medication.
• A relative is convinced that a spouse living in a nursing home has a depression and wants the resident to be treatment for this. The staff does not see the symptoms of depression but sees that the citizen has a slide in his dementia. The resident’s doctor is contacted and also sees worsening in dementia and will therefore not treat the resident for depression. The relative is very unhappy about this and contacts the staff.

These examples require an in-depth dialogue so that the relatives and staff achieve the same understanding of the situation and so that the resident with dementia does not suffer.

Alone back in the shared home

For a relative, it can be experienced as a major upheaval, from having to help your spouse or cohabitant around the clock and to living alone. A new life situation arises where the sick spouse or cohabitant lives somewhere else and is cared for by others. It is perfectly normal to experience emptiness, abandonment and loneliness when you are the one who remains in the old home. Here it can be a great help to maintain contact with family, friends, neighbors, colleagues and others in one’s network. In addition to a support company, your network can help with relief and visit your spouse / partner at the nursing home.

Visit to the nursing home

It is not always an easy task to come as a visitor. What can we do, how do the staff work, what about the other residents, etc. Many relatives do not have the energy to take care of their family member because they are worn out after providing care for many years prior to moving into the nursing home. Some find it difficult to cope with weakness, serious illness, old age, and death — not just with their own family member. Others feel insecure about how they should behave in the new setting. However, a visit can mean a lot to the person who has moved into a nursing home. A good visit is a visit where you can do something together. Talks about the experiences that the resident with dementia has had – activities, excursions and other events at the nursing home. In addition, talk about the life the resident’s former lives; it confirms him / her in who he / she is. The following activities can help to facilitate fellowship and possibly the conversation.

• Bring photos or video recordings of recent family events.
• Take the resident out into the open.
• Invite the resident on a drive. Bring your coffee or stay at an inn.
• Take the grandchildren on visits. Let them do what they have always done with their grandparents – play games, watch children’s shows, movies, etc.
• If the family has a dog, bring it on a visit, but arrange it with the staff beforehand. Show the pet to of the other residents, it creates life and brings joy.
• If you play an instrument, offer to hold a concert for all residents.
• Watch a movie together.
• Games, puzzles, old photo albums, magazines, crossword puzzles can also be things to share.
• Give manicure or hand massage.
• Sit still together, e.g. in nature.
• Physical touch by hugging or stroking the hand.
• Speak quietly and be patient

The last time

Most of us are not used to talking about death. Even spouses who have been married for many years may find it difficult to embark on the inevitable. However, it is a good idea to talk about the last wishes while time is. If the relative knows the residents wishes, it will be easier to be present lately. The dying person has an influence on their own situation, and relatives are given the opportunity to follow the dying person’s wishes and needs. It may be a good idea already to talk about death at the nursing home’s first meeting with the resident. It can be in the form of a ‘co-operation book’ or the design of a Care Will, where the resident’s wishes for resuscitation, a dignified end to life and the funeral are described.

For a relative, it is important to discuss the wishes, expectations and opportunities to be physically present.

For the relative, the grief of losing a loved one has been long lasting. A relative of a person with dementia says “The grief over the loss of my husband has followed me for many years. Some days it was heavier than others were. It was heaviest when my husband was going to a nursing home. ”

Existentially, the relative may also experience more invisible losses such as losing meaning, hope and community. These losses, in turn, can cause spiritual pain in the form of grief, guilt, meaninglessness, hopelessness, and loneliness. For an employee, it is important to have an understanding of the situation that the relative is in when the person with dementia has died. A good support group of relatives can help the relative in grief. A relative says “- No matter how hard it is in the beginning, it is important to talk and exchange experiences with someone who has or had a person with dementia in their lives”.

References::

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Alzheimer Society of Canada (2016), Communication in Day to Day Series.

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