Getting Help With Dementia Care
Dementia is a progressive disease that worsens over time. In the early stages, spouses can often provide the necessary care. As a spousal caregiver, some things you can do to better cope with dementia care are:
- Encourage independent living
When the pressures of caregiving become too much for you, one of the best resources for Alzheimers spouse support is in-home care.
At Stowell Associates, We have 38 years of experience in the eldercare industry. Our trained Care Managers and Caregivers know how to deal with someone with dementia. If your spouse has dementia and you dont know how to handle a loved one with dementia, Stowell Associates offers three in-home care services that could benefit you.
How Can I Support Someone As Their Dementia Progresses
As a person’s dementia reaches its later stages, they become increasingly dependent on others for their care.
They may have severe memory loss and no longer recognise those close to them. They may lose weight , lose their ability to walk, become incontinent, and behave in unusual ways.
Not everyone will show all these signs, and some people may show them earlier on in the illness.
The Challenges And Rewards Of Alzheimers Care
Caring for a person with Alzheimers disease or dementia can often seem to be a series of grief experiences as you watch your loved ones memories disappear and skills erode. The person with dementia will change and behave in different, sometimes disturbing or upsetting ways. For both caregivers and their patients, these changes can produce an emotional wallop of confusion, frustration, and sadness.
As the disease advances through the different stages, your loved ones needs increase, your caregiving and financial responsibilities become more challenging, and the fatigue, stress, and isolation can become overwhelming. At the same time, the ability of your loved one to show appreciation for all your hard work only diminishes. Caregiving can literally seem like a thankless task.
For many, though, a caregivers journey includes not only huge challenges, but also many rich, life-affirming rewards.
Caregiving is a pure expression of love. Caring for a person with Alzheimers or dementia connects you on a deeper level. If you were already close, it can bring you closer. If you werent close before, it can help you resolve differences, find forgiveness, and build new, warmer memories with your family member.
Caregiving can teach younger family members the importance of caring, compassion, and acceptance. Caregiving for someone with dementia is such a selfless act. Despite the stress, demands, and heartache, it can bring out the best in us to serve as role models for our children.
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The classic line I always use is that this is the disease talking. It is not the person, Hashmi says. There is a lack of awareness in that moment. Its not your mom or dad or spouse saying that. Its the disease.
When you are faced with a loved ones aggression, Hashmi suggests employing these 4 Rs:
When theyre feeling calmer, Hashmi says, you can try asking yes/no questions to help determine whether an unmet need is causing the behavior. Ask: Are you hungry? Are you thirsty? Are you in pain? Are you tired?
Coping Strategies For Caregivers
Caring for a spouse with memory loss is one of the most challenging roles youll fulfill for your loved one. In addition to online caregiver support communities such as Caregiving.com, here are a dozen coping strategies to support you both on your memory care journey:
Something similar is underway with Dementia Villages. In both cases, the concept is to help those with memory impairment feel at home in the past, now the present.
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Common Causes Of Sleep Problems In Dementia Patients
Troubled sleep is thought to be a dementia risk factor as well as a behavioral symptom. Here are some factors that may contribute to your loved ones sleep problems:
- Brain changes. Dementia patients have steeper changes in their brains sleep architecture and their circadian rhythms, causing sleep disturbances.
- Over-the-counter medications. Some over-the-counter medications labeled PM can disrupt sleep by making patients sleep for a bit but then making them more confused or sleepy at the wrong time, Hashmi says.
- Diet. Caffeine, excess sugar , and alcohol can disrupt sleep patterns, Hashmi says.
- Electronic screens. The blue light from a computer, portable electronic devices, and television screens can delay sleep and disturb sleep patterns, Hashmi says.
Caring For The Caregiver
Spousal caregivers, just like other family caregivers, need to take time for themselves to relax, recharge and renew. Many spouses feel like theyre failing their marriage if they ask for help or want some time away from their partner. However, spending all your time caring for your spouse is draining and can leave you feeling hopeless, exhausted and angry. By asking for help and taking time out for you, youll be better able to connect with your spouse when youre spending time with them.
For more information about how dementia affects marriage, or to learn more about our community, our culture and our mission and values, please contact us at 925-272-0261.
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Learn How To Communicate
Set a positive mood for interaction. Keep in mind that your body language and attitude communicate your feelings, sometimes even more strongly than do words, so use facial expressions, tone of voice and physical touch.
Get your spouses attention and show your husband or wife that you are paying attention too. Limit distractions and noise by turning off the television or computer, closing the curtains and doors, or by moving to a quieter environment. Sit or stand at eye level and maintain eye contact throughout the entire conversation.
Establish a pleasant and respectful tone. The brain changes associated with dementia can make your spouse prone to anxiety, confusion and stress, so try to maintain a calm demeanor whenever possible. Address your spouse by his or her first name or nickname.
Ask simple, answerable questions or make actionable statements. Ask one question at a time yes or no questions often work best. For example, instead of asking your spouse which shirt he or she would like to wear, hold up one shirt and ask if they would like to wear it.
State your question or comment clearly use simple words, short phrases and limited, concise instructions. Speak slowly, at a normal volume and with a reassuring tone. If your spouse cannot understand you, try speaking to him or her in a lower pitch rather than speaking at a higher volume. If your husband or wife still does not understand you, wait a few minutes then rephrase the question or comment.
Following A Partner Or Carer Around
Dementia makes people feel insecure and anxious. They may “shadow” their partner or carer as they need constant reassurance they’re not alone and they’re safe.
They may also ask for people who died many years ago, or ask to go home without realising they’re in their own home.
Try to:
- have the person with you if you’re doing chores such as ironing or cooking
- reassure them that they’re safe and secure if they’re asking to go home
- avoid telling them someone died years ago and talk to them about that period in their life instead
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How To Connect With The Person
Communicating with a person with late-stage Alzheimers disease can take effort and patience. Though that persons ability to respond may be limited, it is important to continue to interact:
- Continue to visit with the person even if responses are limited.
- Try to speak calmly and slowly be aware of the tone and volume of your voice.
- Consider sharing familiar stories with the person.
- Make eye contact, say the persons name and smile.
- Use other methods of communication besides speaking, such as gentle touching or massage.
- Have the person listen to music or calming nature sounds.
Learn more about how to communicate with a person who has Alzheimer’s disease.
Reach Out For Support From Both Professionals And Peers
When a person learns that their spouse/partner has been diagnosed, it may be extremely helpful to reach out to trusted resources and find ways to connect with others at different points along the journey to get informed, educated and prepared, says Kaiser.
Try to find a support group with lots of open discussion, not just lectures from experts, says Johnson-Young who explains that hearing from others who have been there and can offer to-the-point answers is important.
In the support group I have been facilitating for years, other spouses/intimate partners will bring up topics of things to expect and share how they handled them, and newer members will look to them for honest answers, she says.
A few ways to find a support group thats right for you:
- Speak to your loved ones physician.
- Connect with your local chapter of the Alzheimers Association.
- Join a private group on social media specific to your loved ones type of dementia where you can post questions, suggests Johnson-Young.
- Download an app, like Gentiles Dementia Caregiver Solutions, which offers info on navigating difficult behaviors, self-care and more.
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What Are The Advantages Of Senior Living For Couples
Assisted living communities help take on the responsibility of caring for a spouse with memory loss, relieving the healthier spouse of some of their stresses.
If one spouse has Alzheimers, the other could quickly become exhausted by the level of care their loved one needs, especially in those with dementia who suffer from insomnia or wandering.
Finding a memory care community that accepts couples is possible and can be the perfect solution to allow a spouse to enjoy time with their loved one while not being overwhelmed by their required level of care.
Likewise, if one spouse is in good health with minor memory issues, and the other needs more help with physical tasks, both peoples needs can be treated individually.
The Kensington Redondo Beach is uniquely set up to provide individualized care for both spouses, so that the caregiving spouse isnt worried about not providing enough care, and the other spouse can get the comprehensive care they require.
The Emotional Side Of Caregiving
Whether you become a caregiver gradually or all of sudden due to a crisis, or whether you are a caregiver willingly or by default, many emotions surface when you take on the job of caregiving. Some of these feelings happen right away and some donât surface until you have been caregiving for awhile. Whatever your situation, it is important to remember that you, too, are important. All of your emotions, good and bad, about caregiving are not only allowed, but valid and important.
Many feelings come up when you are caring for someone day in and day out. Many caregivers set out saying, âThis wonât happen to me. I love my mother, father, husband, wife, sister, brother, friend, etc.â But after awhile, the ânegativeâ emotions that we tend to want to bury or pretend we arenât feeling come up. Caregivers are often reluctant to express these negative feelings for fear they will be judged by others or donât want to burden others with their problems.
If you donât deal with ALL of your emotions, they can be like a two-year-old who wants your attention: they will keep tugging at you until you stop and acknowledge them. Not paying attention to your feelings can lead to poor sleep, illness, trouble coping, stress eating, substance abuse, etc. When you admit to your feelings, you can then find productive ways to express them and deal with them, so that you and the care receiver can cope better in the future.
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Ways To Find Dementia Support
- Don’t be too proud to ask for help.
- Take a break so that you can recharge your batteries. You are now the most important person in the family, so finding time for yourself is essential. See if you can get a short holiday, there may be respite care available in your area, or get a family member to take over the caring for a short period.
- As each crisis hits, family, doctors, psychiatric nurses, social workers and day care centres can all give support. Don’t be afraid to ask.
- There is a lot to organise, and it is important to take care of yourself as well as your spouse.
- Talk to family and friends about your concerns, and arrange the help you need. Don’t try to do it all yourself.
- You may need help to organise your finances or housing arrangements.
- Day care might need to be put in place. Talk to your doctor or social worker about the support that is available for you.
- Accept all offers of help, as you have to look after yourself so that you can keep well and care for your loved one. Spend time with a good friend and have a laugh. Go out and enjoy yourself to have a break. You are doing an amazing job and need all the help you can get.
- Read my book ‘A Healing Hug for Alzheimer’s Caregivers’ which will help you to understand and cope with difficult situations, and find ways to get respite for yourself. It will help you to regain some quality of life, and enjoy some precious moments with your loved one.
Ways To Reduce Alzheimers Shadowing
1. Include other trusted peopleOne of the best ways to help your older adult feel safe and secure even if youre not there is to expand their world to include one or two more people.
This needs to be done slowly so your older adult can grow to trust and rely on the new people and feel comfortable enough to be alone with them while you get some much-needed time away.
These additional people could be other family members, close friends, or professional caregivers.
Start by having them come on a regular schedule to help while youre with your older adult. Then, slowly ease them into doing more.
Over time, your older adult will be ok with them taking over while youre not around.
2. Involve them in repetitive, soothing activities when you need to step awaySometimes you just need time to do chores in the house without someone breathing down your neck.
When this happens, ask your older adult to help you and give them a soothing, repetitive task to keep them occupied and take their mind off their fear.
For example, if you need to cook dinner, ask them to sit at the kitchen table and sort a pile of forks and spoons, fold hand towels, smooth crumpled tissue paper, or organize the kitchen junk drawer. Any safe activity that doesnt cause trouble will do.
The goal isnt to have your older adult accomplish the task correctly, its to keep their hands and mind happily occupied.
First, find a way to gently validate what theyre saying.
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What Is Dementia Shadowing
When your spouse is diagnosed with dementia, many things will change for them. Fear will become a permanent part of their life. Fear of forgetting you and other loved ones, forgetting cherished memories, where they are, getting lost, or even being afraid they will get hurt.
You are their partner and their companion they trust you completely.
They are going to latch onto you like a security blanket. With you, they are safe and protected. They can relax a little. You are there to help them if something happens.
As frustrating and suffocating as this can feel for you, keep in mind your spouse is not following you around for an ulterior motive. They are not trying to control you or pester you. Be empathetic and try to see things from their perspective.
Typical Behaviors of Dementia Shadowing
- Your spouse follows you around everywhere you go at home and in public.
- He or she becomes agitated or anxious when you are out of sight and try to leave the room or close a door.
- They regularly ask you what you are doing or where you are going.
- You cant take a shower or use the bathroom without being interrupted.
Living With The Disease
Jo Anne Jordans husband of 49 years, Ed, was diagnosed with Lewy Body Dementia several years ago. It caused him to have a sleep disorder and while he was dreaming he sometimes got violent. This was against his nature as he was a pastor.
At church, he started having memory problems that he and his family thought may have been caused by stress. However, after he retired, his cognitive abilities got worse.
He began hallucinating and thought he saw insects, mice, and even large objects that werent there. Jo Anne had read a book about dementia and decided to take him to a neurologist. The first doctor they saw wasnt helpful at all, so they found one who was able to diagnose the problem and help them to manage it.
Ed is now in his 70s and is doing well physically. His balance is a little off, but he can do more tasks than he could before like mow the lawn and take out the garbage. Lewy Body Dementia causes visual and spatial challenges so he cant drive anymore.
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