In the past two months we have written about caregivers and people with dementia experiencing changes in three areas: in the person with dementia, in the relationship between caregiver and the person with dementia, and in the caregiver. This month is the final article in the series and we focus on the changes in caregivers.
Caregivers can become so focused on providing care that they may not realize their bodies and lifestyle are being affected by caregiving.To give the best care possible, it is essential that you be aware of what may be occurring within yourself, apart from from the person with dementia and in your relationship. In this way you are able to protect and to pace yourself for caregiving.
Changes may occur in several areas:
- Social life: As time required for caregiving increases, caregivers often find that, little by little, they are restricting their activities and withdrawing from friendships. A spouse may stay home more and more because their husband or wife becomes anxious and agitated when they are not around. They may also want to protect him or her from embarrassment so do not go out with friends.They stop taking holidays either because the person with dementia cannot and they do not want to go on their own, or because they would feel guilty, knowing that they are having fun away from their partner, or from fear that something something may happen while they are away.Adult children sometimes end up spending more and more time in their parent’s home, or taking them to appointments, cleaning, cooking, and doing other tasks, to the point that they let go of their own social life.They too may not take holidays out of fear something will happen or because there is no one to take care of their parent.
- Stress levels increase: Caregiving can become increasingly stressful for many reasons. These include the grief of watching a loved one change and deteriorate; having to provide more and more support; being torn between caregiving and other demands in life such as family and work; guilt when someone feels that they are not doing enough or are making the wrong decision; and lack of support.Adult children worry about what is happening when they are not around: is their parent safe? Have they fallen? Let someone in the house?
- Physiological changes: Stress impacts people’s bodies. Their immune systems may become impaired, their heart is strained, they may suffer increased pains and aches, and their body is putting out differing levels of hormones.
- Sleep Patterns: Caregiving can be physically and emotionally tiring.Sleep can be disrupted as stress levels increase. Sometimes a person with dementia reverses night and day. They are awake and up at night, and their caregiver is up to watch them, and also up during the day. Caregivers are often hyperalert, because someone with dementia is at risk in many areas
- Finances: Support for caregivers from the government has been significantly reduced over the past few years, shifting both a financial and emotional burden onto family. Caregivers sometimes find that they have to hire private help to supplement what they do receive and to be able to cope. Adult children sometimes end up providing financial support to parents. They may be confronted by having to make a choice between caring for a parent and taking a job promotion or transfer. At times caregivers leave their work altogether. Look at the Diamond Geriatrics resources section on our website for support for caregivers from the government and other sources.
Equipment needed for someone as dementia progresses can be expensive–a walker can cost several hundred dollars. A proper wheelchair can cost up to $4,000.00. Home renovations such as ramps and safety equipment can also cost between hundreds and thousands of dollars. Caregivers often have to make adjustments in their lives to pay for this equipment.
- Libido and appetite: As stress levels increase, caregivers may find that they have less and less interest in sex. They turn away from partners and do not give or get the intimacy that they need, at a time when they really need it more than ever. They may find they have no appetite (or increased appetite as they unconciously seek out sugar, caffeine, or other stimulants to keep going). Food may be tasteless or unappealing.
- Behaviour and Emotions: Stress, lack of sleep, guilt, and feeling trapped can lead people to act in ways they never thought they would. They may find that they are often angry and have less patience. Normally loving and well meaning caregivers may find themselves being physically or emotionally abusive or neglectful. Someone who is generally a positive person, can find themselves feeling hopeless and depressed.
Several of the symptoms we described above are symptoms of burnout. Changes that do occur do not happen all at once. As dementia is often a progressive condition, so the changes in Caregivers are progressive.
Not everyone who gives care experiences all of the these changes.The differences are due to many factors–personality, the type of relationship before the dementia set in, caregiver health, family dynamics, extended family support, external stressors such as work and finances, the ability to set limits, cultural background and more. It is important that you understand and act within the limits of what you are able to, and not compare yourself to others.
How Diamond Geriatrics can help: We have compassionate and professional counsellors with decades of experience in helping caregivers with the practical and emotional problems they experience as they caregive to someone with dementia. Call us when you don’t know what to do and need some support.
Choices for Caregivers
You as a caregiver may not be able to change the course of the dementia your loved one has, but you can change how you react to it and how your fulfill your role as a caregiver.
The most important way to have some control over your caregiving role is to know what is coming down the road. Learn about dementia and the skills you will needs as a caregiver. Learn about the resources that are available to you from the government, the Health authorities, and from the private sector.
Don’t re-invent the wheel. Talk to other caregivers, go on line, and read to learn what people have done in your situation and how they have coped.
Try this exercise: In the first column of a four column table, determine and write down what your own personal stumbling blocks will be, such as guilt, lack of support, health,isolation or others.Use the examples in the top article if you wish.In the second column, write down your goals to over come those blocks. In the third column write down the actions you will take to overcome those blocks, and in the fourth column, write the date by which you will have started to work on them. Then share that worksheet with someone who will help you hold yourself accountable.
Physical exercise will also help you to effectively meet the challenge of caring for someone with dementia. It will clear your head, help you sleep, help your body, and relieve and even increase your ability to tolerate stress. Along with physical exercise, learn and practice relaxation techniques through yoga, mindfulness, or other techniques. Once you are comfortable doing them, you can take even just a few minutes during the day to practice them.
How Diamond Geriatrics can help: We can help you find the resources you need and support you in your caregiving role.We can assist you to find seniors housing or nursing homes, as well as to plan and carry out the move.After the move, we are available to make sure your loved one gets the best possible care after the move and on an ongoing basis. We can save you hours of your time and help you find some peace of mind.