Living Alone With Dementia
One of the most difficult conversations to have with a senior with Alzheimers involves discussing living arrangements. Living alone with dementia is risky, but most seniors prefer to age in place. As the disease progresses, risks of falling, wandering, leaving a stove on, forgetting medications, or experiencing isolation and loneliness increase.
The stage of the disease and safety are important factors to consider when discussing aging in place. Now is the time to consider in home care, support that can prove invaluable to a senior coping with dementia.
When a family comes to me with concerns about a loved one with dementia, I often recommend a home care provider so the older adult can safely remain at home for as long as possible. states Jill W. Love, Geriatric Care Manager with Peters and Love. Caregivers provide valuable assistance with meal preparation, personal care, medication reminders, companionship, supervision, and so much more. Since caregivers get to know their clients very well, they have the ability to improve the older adults quality of life through engagement and personalized care. As a geriatric care manager, I rely on the caregivers observations and insights when considering changes to the care plan, and I consider them an integral part of the care team.
Sometimes, its easier to take smaller steps rather than make one big change. If your aging parent expresses that they want to remain at home:
Coping Tips For Caregiving And Alleviating Stress
While behavioral changes are always challenging for adult children caring for a parent with dementia, some general communication tips can help you cope in this new environment daily. Implementing these communication strategies can create a more positive experience overall.
Start by paying particular attention to your tone of voice and facial expressions. While dementia takes away memory, it doesnt take away emotions. Setting a positive atmosphere through body language and voice goes a long way towards putting those with dementia at ease.
Its also important to simplify what it is you want to convey. Dementia innately makes it harder for someone suffering from the condition to focus. Making your message clear, concise, and direct is always helpful. If you have something important to say to a parent with dementia, be sure to remove all surrounding distractions before you deliver the message to avoid frustration.
Everyone could use a little reassurance from time to time, and its no exception for those who have dementia. Consistently let your parent know that they are safe and loved. This type of messaging also works to put you at ease when things get complicated.
Finally, be sure to find time to laugh. A sense of humor is empowering for both you and your parent with dementia. Humor lightens the mood and can help everyone focus on relationships instead of frustrations for a while.
Understanding Your Feelings Of Guilt
One of the strongest and most difficult emotions personally related caregivers struggle with is guilt. As the primary caregiver of someone diagnosed with dementia, you want to do therightthing for your mom or dad, the way you think they would want things to be done, the way you promised them you would a long time ago.
Unfortunately, as dementia progresses, it brings with it unrealized circumstances and overwhelming difficulties which can make it impossible for you to be the caregiver you want to be, the caregiver you think they would want you to be, the caregiver that you promised to be.
Primary caregiver guilt is generally a response to having unrealistic expectations of your ability to control your parents situation as well as misconceptions about the disease. As the primary caregiver, you are being challenged to make decisions for your parent that include personal care, safety needs, financial oversight, health needs and even living environment. You want to do the best for your mom or dad but sometimes the reality of the disease can become emotionally and physically overwhelming for you, limiting your ability to care for your mom or dad in the manner you would like.
Below you will find a few good practices & coping mechanisms for dealing with the guilt of caring for a parent with a dementia diagnosis.
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Caregiving In The Late Stages Of Alzheimers Or Dementia
As Alzheimers or another dementia reaches the late stages, your loved one will likely require 24-hour care. They may be unable to walk or handle any personal care, have difficulty eating, be vulnerable to infections, and no longer able to express their needs. Problems with incontinence, mood, hallucinations, and delirium are also very common.
In your role as caregiver, youll likely be combining these new challenges with managing painful feelings of grief and loss and making difficult end-of-life decisions. You may even be experiencing relief that your loved ones long struggle is drawing to an end, or guilt that youve somehow failed as a caregiver. As at the other stages of your caregiving journey, its important to give yourself time to adjust, grieve your losses, and gain acceptance.
Since the caregiving demands are so extensive in the later stages, it may no longer be possible for you to provide the necessary care for your loved one alone. If the patient needs total support for routine activities such as bathing, dressing, or turning, you may not be strong enough to handle them on your own. Or you may feel that youre unable to ease their pain or make them as comfortable youd like. In such cases, you may want to consider moving them to a care facility such as a nursing home, where they can receive high levels of both custodial and medical care.
Connecting in the late stages of care
Treat Your Aging Parents Like Adults
Your parents are still your parents, and it can feel jarring to them and to you if you begin treating them like the child in the relationship. Remember that your parents are adults and they deserve to be treated as such. During your conversations, focus on empowering them and giving them plenty of choices and input into every decision.
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Alzheimers Association Recommends Maintaining Routines And Sticking By Them
According to research, having a daily routine plan is one of the most effective methods for reducing challenging behaviors of a senior suffering from this disease. Give your mom or dad as much independence in daily tasks as possible.
Much of the frustration in Alzheimers patients come from losing the ability to perform basic daily tasks. If you are caring for your parent, it may be based on their having taught you how to perform these tasks when you were a child. This loss of ability can lead to stubbornness when you try to step in and do the tasks for them. When possible, let your loved one perform intimate or basic tasks on their own. This can reduce stress and frustration for both parties.
How To Plan For Your Parents Long
Once youve received a diagnosis, its important to evaluateyour parents current capabilities to see where they might need support. Itsalso recommended to research how the dementia will progress. Different types ofdementia can affect people in different ways and this can give you an idea ofwhat to expect in the future.
Caring for a parent with dementia can have a heavy emotional and physical toll, so dont be afraid to reach out for additional help. You can check out your local Alzheimers Society to find services, resources, and support groups in your area. You may be inclined to be the primary caregiver or you might prefer to seek professional help. In either case, you should ensure that your parents best interests are always put first.
If you wont be able to dedicate the time and effortrequired to care for your parent, hiring an in-home personal care assistant maybe the best option. Alternately, you could consider a special care facilitywhere your parent will receive 24-hour care.
Discussing Quality of Life with Your Parent
No matter which route you decide to take, its important toinvolve your parent in the planning process for their long-term care. Ofcourse, you need to consider how a caregiver can support your parentsdeclining cognitive abilities, but their emotional needs should be met as well.
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If You’re Struggling To Cope
Carers often find it difficult to talk about the stress involved with caring. If you feel like you’re not managing, don’t feel guilty. There’s help and support available.
You may benefit from counselling or another talking therapy, which may be available online.
Talk to your GP or, if you prefer, you can refer yourself directly to a psychological therapies service.
Seek Professional Dementia Care Assistance
If youre unable to get through to your loved one and youre left thinking, I cant cope with my moms dementia and their refusal of care then you can always seek out a professional dementia care manager.
Care managers are beneficial for both family caregivers and their loved ones with dementia because they:
Dementia care experts know how to handle a parent with dementia who refuses care. They have training and experience with all kinds of scenarios, like dementia patients refusing to take medications.
So for anyone whos wondering, My mom or dad has dementia, now what? connecting with a dementia care manager can help you understand dementia and how to best help your parent.
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Preserving Your Loved Ones Independence
Take steps to slow the progression of symptoms. While treatments are available for some symptoms, lifestyle changes can also be effective weapons in slowing down the diseases progression. Exercising, eating and sleeping well, managing stress, and staying mentally and socially active are among the steps that can improve brain health and slow the process of deterioration. Making healthy lifestyle changes alongside your loved one can also help protect your own health and counter the stress of caregiving.
Help with short-term memory loss. In the early stages, your loved one may need prompts or reminders to help them remember appointments, recall words or names, keep track of medications, or manage bills and money, for example. To help your loved one maintain their independence, instead of simply taking over every task yourself, try to work together as a partnership. Let your loved one indicate when they want help remembering a word, for example, or agree to check their calculations before paying bills. Encourage them to use a notebook or smartphone to create reminders to keep on hand.
Behaviors To Expect As Dementia Progresses
Dementia is a progressive brain disease without a known cure. While children learning how to deal with dementia in a parent often anticipate memory loss, many are taken by surprise when other symptoms come into play.
As the disease creates structural abnormalities in brain tissue, the results are often significant and can seem severe. Its common to notice progressive changes in personality, mood, language skills, attention span, and problem-solving abilities over time.
For adult children learning how to deal with dementia in a parent, these personality changes and mood swings can initially seem scary. Many feel their parent has been replaced by a totally different person.
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Ways To Reduce And Manage Mean Dementia Behavior
1. Calm the situation downThe first thing to do is reduce the tension in the room.
Start by limiting the distractions in the room, like turning off the TV or asking others to leave.
And if you stay calm, theyre also more likely to calm down.
It might help you to count to 10 or even leave the room for a short time to cool down. Repeat to yourself its the disease as a reminder that theyre not intentionally doing this.
If the current activity seemed to cause the agitation, try shifting to a more pleasant, calming activity. Or, try soft music or a gentle massage.
2. Comfort and reassure while checking for causes of discomfort or fearTake a deep breath, dont argue, and use a calm, soothing voice to reassure and comfort your older adult.
It also helps to speak slowly and use short, direct sentences.
Then, check for possible causes of agitation or fear, like:
- Feeling disturbed by strange surroundings
- Being overwhelmed by complicated tasks
- Frustration because of the inability to communicate
It also helps to focus on their emotions rather than their specific words or actions. Look for the feelings behind what theyre doing as a way to identify the cause.
3. Keep track of and avoid possible triggersWhenever difficult behavior comes up, write down what happened, the time, and the date in a dedicated notebook.
Also think about what was going on just before the behavior started and write that down as a possible trigger.
Taking some time away can help both of you.
How To Effectively Talk To A Parent With Dementia
Communication is a big challenge for many individuals when dealing with loved ones suffering from dementia. Because of the inability to focus and remember, dementia patients experience feelings of anger and confusion, which may result in oppositional and aggressive behavior toward family caregivers in contact, like a family member or a spouse. This is why family caregivers often feel lost and helpless when talking to ageing parents with dementia.
However, communication doesnt have to be the barrier that stands between you and your parent. By understanding the condition of dementia better and practicing strategies to deal with dementia behavior, you too can effectively communicate with a dementia patient.
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Things Not To Say To Someone With Dementia
Speaking to an elderly loved one with dementia can be difficult and emotionally draining. Alzheimers and dementia can lead to conversations that dont make sense, are inappropriate or uncomfortable, and may upset a family caregiver. However, over time, its important to adapt to the seniors behavior, and understand that their condition doesnt change who they are.
For senior caregivers, its important to always respond with patience. Here are some things to remember not to say to someone with dementia, and what you can say instead.
1. Youre wrong
For experienced caregivers, this one may seem evident. However, for someone who hasnt dealt with loss of cognitive function before, it can be hard to go along with something a loved one says that clearly isnt true. Theres no benefit to arguing, though, and its best to avoid upsetting a senior with dementia, who is already in a vulnerable emotional state due to confusion.
Instead, change the subject.
Its best to distract, not disagree. If an elderly loved one makes a wrong comment, dont try to fight them on it just change the subject and talk about something else ideally, something pleasant, to change their focus. There are plenty of things not to say to someone with dementia, but if theres one to remember, its anything that sounds like youre wrong.
2. Do you remember?
Instead, say: I remember
3. They passed away.
Instead
4. I told you
Instead, repeat what you said.
Tips For Handling A Seniors Aggression
Most importantly, try not to take the aggressive behavior personally, Hashmi says.
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?
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Give One Instruction At A Time
Granted, this is sometimes easier said than done when life gets busy and youre in a rush!
Still, giving one instruction at a time can make communication much easier.
Multi-tasking is hard enough for adults without cognitive impairments, so you can imagine what it might be like for those living with dementia.
It may take your parent a while to get their words out, so hold back from asking further questions before theyre able to answer.
Repeating the question or rephrasing it slightly differently can help move the conversation along.
Try to give your loved one at least 20-30 seconds to respond.
Do Not Shy Away From Asking For Help
No one may have all the answers especially when it comes to taking care of a person with dementia. Try doing research on how their behavior changes and what needs to be done to help them live their lives without too many complications. Hire help when it becomes too much as it also ensures that you do not become too frustrated or drained. When you have multiple family members who can help, ask everyone to pitch in and look after the patient so that you can get some personal space to breathe and re-energize when it is your time to look after the patient. When you feel like you can no longer look after your loved one at your own home, it may be time to consider assisted living. In such case, look into dementia care homes that can provide specially trained professionals.
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