For All Family Members
Some of the most common feelings families and caregivers experience are guilt, grief and loss, and anger. Rest assured that you are not alone if you find yourself feeling these, too.
Guilt
It is quite common to feel guiltyâguilty for the way the person with dementia was treated in the past, guilty at feeling embarrassed by their odd behaviour, guilty for lost tempers or guilty for not wanting the responsibility of caring for a person with dementia.
If the person with dementia goes into hospital or residential care you may feel guilty that you have not kept him at home for longer, even though everything that could be done has been done. It is common to feel guilty about past promises such as âIâll always look after you,â when this cannot be met.
Grief and loss
Grief is a response to loss. If someone close develops dementia, we are faced with the loss of the person we used to know and the loss of a relationship. People caring for partners may experience grief at the loss of the future that they had planned to share together.
Grief is a very individual feeling and people will feel grief differently at different times. It will not always become easier with the passing of time.
Anger
It is natural to feel frustrated and angryâangry at having to be a caregiver, angry with others who do not seem to be helping out, angry at the person with dementia for her difficult behaviours and angry at support services.
Check Elder Care And Dementia Care Services In Your Community
There may be times when caregivers are not able to care for their loved one. If additional help is needed during the day, adult day care centers provide entertainment and care for people with dementia while giving much-needed breaks for their caregivers.
Home services are also available to give you more time in your day. Certified nursing assistants can visit your home to help with medical needs, such as administering medications or caring for wounds. If you need more help, in-home health aides can cover light housekeeping, cooking and other nonmedical needs. Some grocery stores and meal services can also assist by delivering food or meals to your home. Try exploring the options that are available to you.
Its important to ask your loved ones doctor or dementia care coordinator for local resources and contacts.
Take A Break From Caring
Taking regular breaks can help you to look after yourself and better support you in caring for someone with dementia.
Family and friends may be able to provide short breaks for you to have time “just for you”.
Other options include:
- day centres social services or your local carers’ centre should provide details of these in your area
- respite care this can be provided in your own home or for a short break in a care home
Recommended Reading: Is Anger A Symptom Of Dementia
How To Respond To I Want To Go Home
Address the emotion behind their words. When responding to their request, its best to focus your response on providing comfort and reassurance. Listen for what they are feeling behind their request – do you think they are anxious? Afraid? Confused? As dementia progresses, people are less and less able to put their feelings into words, and how they feel tends to come out in behavior, including repetitive questions and statements, instead.
Approach them in a calm and soothing manner and validate and respond to the emotion instead. If you stay calm, it is more likely they will start calming down.
Put their feelings into words by saying something like You must be feeling worried or Its hard that this place is so unfamiliar or I can understand if youre feeling sad right now.
And then do whatever you can to offer comfort. If they like hugs or holding hands or sitting close or having their arm or back rubbed, do that. Give them a blanket or other comforting object.
Join them in their reality. Trying to use logic and reasoning to get them to understand their situation or to convince them of a reality that is not their own will likely only make them more upset. Dont say things like But you *are* home, dad or This is your home now.
Again, validate that you hear their desire by simply saying I know you want to go home, or I wish you could go home too. If they feel heard and understood, they are more likely to be able to calm down.
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After Two Weeks Or So Start To Wean Yourself And Your Loved One
- Visit every other day instead of every day, eventually go every third day.
- Make a mental list of things to talk about, as your loved one wonât have information to share with you.
- Learn the schedule and visit during âfree timeâ rather than activity time.
- Take your loved one for walks around the facility, particularly in the garden, if they have one.
- Bring photo albums to look through, or a tablet or cel phone to visit Facebook to share pictures and stories of family and friends.
- If you know someone else has visited, remind your loved one that they came.
- Shorten your visits. The person with dementia usually doesnât remember if you have been there for five minutes or five hours. Ultimately itâs better to visit three times per week for 20 minutes than once a week for an hour.
- Do not go on outings until your loved one is totally adjusted to their living situation, and then only if you think it would be helpful and not confusing.
- Come with a friend or someone else who knows the person. Remind your loved one who this other person is.
- Bring videos that you would like to watch and watch them together, particularly comedies and old movies. Even if he/she canât follow the story, they can often enjoy the experience, and you can hold hands or sit close and feel connected during this time.
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Who Makes The Decision
When making the decision to put someone into a care home, its important to involve all parties. Ideally it should be the decision of the person going into the care home.
Even if the person in question does not have the mental capacity to be involved in the decision making process about the move, you should still involve them and make them feel valued and considered. Where possible, do offer them choices to give them a feeling of control and always be positive and upbeat.
This can be a really difficult and upsetting time for everyone, so its important not to rush conversations, allow all family members enough time to come to terms with the move and put proper plans in place to reassure the person that they will be well looked after.
If the family member in question lacks the mental capacity to know what is in their best interests or is unable to communicate, getting advice and support from a personal welfare deputy or a Lasting Power of Attorney, or LPA, can help you to make important decisions for them.
A Health and Welfare Lasting Power of Attorney allows you to decide when your loved one should move into a care home.
With a Property and Financial Affairs LPA in place, you will also have the legal power to make financial decisions for your loved one and pay for their care.
If the person with dementia doesnt have an attorney, the decision should be made by health and social care professionals and friends and family close to the person.
Improved Quality Of Life
There are so many amazing care homes out there that promise to give residents a high quality of life, through socialising with staff and residents, joining in daily activities and taking care of mindfulness and wellbeing.
Many elderly people experience social isolation and loneliness, so often moving into a care home gives them a new lease of life, lets them rediscover old hobbies and try out new ones.
Also Check: What Is The Difference Between Dementia And Senility
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.
Reminiscing Can Provide Comfort
The next time your loved one talks about going “home,” remember that it may be a reference to the past. Try to respond with some questions of your own. For example, you can ask about your loved one’s childhood memories, or you can look at old family photographs together. Reminiscing about childhood and the home where the person grew up can be comforting.
You might also try using validation therapy. With this approach, you validate your loved one’s experiences and emotions by asking questions that help them process their feelings. This can help your loved one work through the loss of their sense of comfort. Some questions could include:
- What was your childhood house like?
- Do you miss it?
- What was the best thing about your family?
- What was your favorite home-cooked food?
- How did the kitchen smell?
- Did you share a bedroom with your siblings?
Try echoing your loved one’s feelings. For example, you could say, “You must wish you could be at home right now.” This can help the person feel like you understand what they’re feeling. That can be very comforting.
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Enroll In Medical Alert Programs
Safety becomes more of a concern as dementia progresses. For peace of mind, consider enrolling in programs that can improve or monitor the safety of people with dementia. Many programs offer medical ID jewelry or 24-hour assistance if a loved one with dementia wanders off or becomes lost. If additional assistance is needed, medical alert services can help by checking in on loved ones and notifying caregivers if there is no response.
What It Means When A Person With Dementia Says I Want To Go Home
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Alzheimers and dementia damage the brain and cause a person to experience the world in different ways.
So, what we hear as I want to go home is often a request for comfort rather than literally asking to go somewhere.
The kindest thing to do is to meet them where they are, focus on comfort and reassurance, and respond to the emotions behind their request.
The goal is to reduce your older adults anxiety or fear so they can let go of the idea.
Helping them to calm down also gives you a chance to check ifdiscomfort, pain, or a physical need is causing this behavior.
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Check If They Have Any Unmet Needs
The elderly person may express a desire to go home when unmet needs are present. Is this question happening after meals or at a specific time where other unmet needs might be concerned? That person might be trying to communicate they need to use the bathroom, but are unable to express that need.
If our brains are healthy, we can either fulfill those requirements on our own or seek assistance. However, with a diagnosis like dementia, then it is possible that they will not be aware of what is making them uncomfortable, which can impact their ability to it this need.
Therefore, if the person you care for who is living with dementia tells you, I want to go home, this could mean they are hungry, thirsty, or exhausted.
You might be asking why a person who is now living with dementia and has an unfulfilled need would ask to go home or see their mother in this current situation. When you think about your own life and what your house and your mother might mean to you, the answer is probably that its a place that comforts you.
When experiencing discomfort, you can stop at a location where you can receive something to drink if youre thirsty, some food if youre hungry, and get someones help. Therefore, if the person you care for has dementia and repeatedly expresses a desire to return home, its possible that what theyre really trying to say is that they want to be in a familiar environment where all of their requirements may be satisfied.
Keep Family Members Informed
This can be done in different ways. You can call and talk to people individually or you can write a family newsletter. Copy the letter and send it to different members of the family so you donât have to rewrite the same information to each one. Just remember, if you keep the lines of communication with your family and friends open, they will be able to understand more easily what you and your family member are going through. The better they understand, the more willing theyâll be to pitch in and help.
Caregiving isnât easy, and itâs important to make sure your aging family member does not take up all your energy. Make sure you find ways to pull together as a family and work together for everyoneâs benefit.
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Is The Environment Bothering Them
There could be a variety of reasons behind a persons desire to return home, one of which could be associated with fulling an environmental need. A person who is living with dementia may experience a great deal of discomfort if the setting in which they find themselves does not have a welcoming, comfortable, familar, or practical, vibe to it.
Are there any smells or textures that would be comforting and familiar to them?
What To Do If They Refuse To Let Go Of The Idea
Sometimes, your older adult will refuse to let go of the idea of going home, no matter how much you try to soothe or redirect.
If that happens, you might need to agree to take them home and then go for a brief car ride.
Experiment with how long it takes before you can take them home without protest. Or, suggest a stop at the ice cream shop, drugstore, or grocery store to distract and redirect.
If its not possible to actually take them out or get into the car, even going through the actions of getting ready to leave can still be soothing. This will shows that you agree with them and are helping to achieve their goal.
Meanwhile, the activities of getting ready give you more chances to distract and redirect to something else.
Keep in mind that not everything you try will work the first time. And even if something works once, it might not work the next time.
Do your best to stay calm, flexible, and creative this technique gets easier with practice.
Also Check: When To Put Alzheimer’s Patient In Facility
Equip Your Home With Assistive Devices
Simple fixes, such as grab bars in the bathroom, carpets tacked down to prevent falls, and locked gun closets, guard against accidents that drive people into nursing homes. In one study, Johns Hopkins researchers found that more than 90% of patient needs in those with dementia were safety-related. Another Johns Hopkins MIND at Home study of 88 patients and their caregivers found that the more safety or navigation supports a person with dementia had, the higher they rated their own quality of life.