Give This News A Chance To Sink In
Although it takes time, coming to terms with your parents diagnosis is a critical step in the process of moving forward, not just for you, but for them as well. Currently, Alzheimers does not have a cure and progresses at varying speeds from patient to patient, so its important to acknowledge that the uncertainty associated with this diseases pace can feel like an emotional roller coaster.
This is especially true if you will be taking on a significant amount of the caregiving responsibilities. While your parents health and well-being will understandably be your primary focus during this time, dont forget your own health and well-being as well.
Alzheimers will affect numerous aspects of your life, so its critical you understand that its OK to experience a wide range of emotions, whether it be fear, grief, denial, disbelief, anger, financial stress or virtually anything else.
Discuss your feelings and the situation as a whole with other family members to help keep the situation rooted in reality and remind you of all those available to you and your parent for support.
Make Sure Your Parent Has Essential Legal Documents
As my mom was showing signs of memory loss, the first thing I did was suggest that she meet with an attorney to update her estate planning documents. I knew this needed to happen quickly because you must be mentally competent to sign documents such as a will, power of attorney and living will.
- A will or living trust spells out who gets your assets when you die. A living trust also can be used to transfer assets while you are living, which can be a useful tool in long-term care planning.
- A power of attorneydocument allows you to name an agent or agents to make financial decisions and transactions for you if you cannot. If your parent names his or her spouse as POA, itâs important to name an alternate POA â such as you, the child â in case something happens to the spouse.
- A living will or advance health care directive allows you to spell out what sort of end-of-life medical care you would or would not want and to name someone to make health care decisions for you if you canât.
Itâs especially important for your parent to have the latter two documents in place before the middle and late stages of Alzheimerâs. At that point, someone will need to be making financial and health care decisions for your parent. If a power of attorney and health care proxy havenât been named and your parent is no longer competent, you or your parentâs caregiver will need to go through what can be a lengthy and expensive court process to be named conservator or guardian.
Finding Comfort In Embracing The Now
Despite the changes that occur with a loved one, Drew says connecting with them in a way that resonates with them can be meaningful for both parent and child.
People with Alzheimers can retain a core sense of self deep into the disease when their brain is still affected. There are things we can do to help support that rather than an environment that shuts them down, she said.
For example, Drew recalls a woman who found that talking to her father about the next-door neighbors from her childhood, reading him his favorite poems, and playing him is favorite songs, resonated with him, and as a result brought her comfort during visits.
Even though he couldnt say her name, he knew she was there for him and that she was one of his people. They were able to have a wonderful connection that was built on a lifetime of being family even until the end of his life, Drew said.
She refers to this approach as person-centered care focusing on the person over the disease.
Calandra practices her own form of person-centered care by tapping into her fathers love of humor.
When I visit, I like to make him laugh. Even though his laugh is different, I know hes happy because he smiles and laughs when I say silly things, Calandra said. I hold on to the fact that he still recognizes me and my voice.
In the process of trying to comfort a parent with Alzheimers, sometimes the primary caregivers well-being gets overlooked.
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Denial Isnt The Answer
Facing dementia is scary, but the first steps toward treatment begin with acceptance. It is the only way to move forward, and elderly parents who refuse to believe a doctors assessment will slip backward. Alzheimers disease is characterized by a steady decline, but for those who refuse treatment, the decline is steep and rapid.
Its possible to live for many years with Alzheimers disease. How well you live depends on early detection and treatment. The goal is to stave off serious symptoms for as long as possible, but it isnt easy to convince a skeptical parent that episodes of memory loss arent natural to old age. Their denial delays treatment.
The Warmth Of The Human Touch
Ever noticed how a good massage helps soothe any person, even a baby enjoys it. A gentle touch or a warm hug can result in a calming effect. It creates a bond between the carer and the person with dementia and helps increase trust. A gentle pat on the hand or shoulders or a soft back rub is a great way to help them feel less agitated or anxious. Truly, touch is everything when words fall short.
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Putting It All Together
Lets recap, because Ive covered a lot of ground. The five steps again were:
Each of these can take you a while to work through. Youll need to gather information. There will be many people to talk to: other close family members, your mothers usual doctors, perhaps even a second opinion from a geriatrician or palliative care specialist, depending on how things go with the usual doctors.
Youll need time to reflect, and to process what you find out and how you feel. Youll also perhaps try one approach for a while, and see how it feels.
In general, working through this process requires at least a few cycles of thinking and talking things through, spread out over some time. Thats because these are complicated messy topics that have lots of pieces to consider, and these issues bring up difficult emotions. Going through cycles of thinking about things gives people some time to gather up various bits of information, and also digest the information and their own emotions.
Things To Seek Out When Your Parent Is Diagnosed With Dementia
Once your parent is diagnosed with dementia, you may want to do everything you can to help them. Are there some things that could be beneficial, but people dont often think of them?
We asked eldercare experts what they would recommend to someone whose parent is newly diagnosed with dementia. They suggested two items that may keep parents with early-stage dementia safer at home and one idea that may benefit your well-being. Read on for their advice:
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Make Financial Legal And Medical Arrangements
If your parents dementia hasnt yet progressed to the point that he or she is debilitated, make sure you work with him or her to develop a care plan.
Now is the time for your parent to choose a residential retirement care provider, to designate his or her medical, legal and financial powers of attorney, and to complete a living will or advance care directive. If your parent has specific ideas for the dispensation of assets, those should be spelled out in legal documentation while he or she can still direct.
A Dementia Caregiver Support Group
After your parents dementia diagnosis, you probably spend a lot of energy worrying about and caring for them, but its also important to care for yourself. Looking after a loved one with dementia can be emotionally and physically taxing, and you may feel that you cant talk to your friends about the experience. Joining a support group may provide you with the outlet that you need.
I think its very important to be around others who know what its like for you and to get their wisdom and their support, says Craig Borchardt, PhD, assistant professor of humanities in medicine at the Texas A& M University College of Medicine and CEO of Hospice Brazos Valley in Bryan, Texas.
If youre hesitant to join a dementia caregivers support group because you dont want to do something solely for yourself, consider that your participation may also benefit your parent.
Being involved in those groups, thats where ideas about things are shared, Borchardt says, because caregivers are very creative, and they have a lot of initiative.
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Talking To Others About Your Diagnosis
While support from family and friends is crucial, choosing who to tell about your diagnosis is always a very personal decision. You may want to share it with just your closest family first, for example, then with a wider group of friends and acquaintances later. Whatever you decide is right for you, its important not to try to go it alone and deny people who care about you the chance to provide support.
Its also important to be prepared for a broad spectrum of reactions. Just as you may have felt a combination of shock, anger, grief, and despair at news of your diagnosis, people close to you may have similar reactions. Remember: you dont have to cover everything all at once. Your first conversation with loved ones is likely to be just the start of an ongoing dialogue as you all learn more about the disease and the challenges youll be facing in the future.
You may find that one of the hardest things about being diagnosed with dementia is the impact it can have on your relationships. As your independence declines, you may become more reliant on your spouse, children, or friends. You may lose your role as provider, financial decision-maker, or designated driver as others take over those responsibilities. Some older friends may even pull away, your diagnosis raising uncomfortable questions about their own health.
When communicating with loved ones:
Get Them A Medical Alert System With Fall Detection
Falling is quite a big issue among seniors, including those without dementia. However, it can be even more prevalent among those who have Alzheimers disease. Falls among people aged 65 and above can lead to fatal injuries. To address this apparent challenge, you can get your ailing parent a medical alert system with fall detection. This gadget can help your elderly parent get assistance quickly in case of an injurious fall. By pressing the SOS button, your parent will be connected to an agent who will assist them. Reading reviews of the best medical alert systems can help you decide which one is best for your parent. In a nutshell, a medical alert system with fall detection will go a long way in enhancing the safety of your ailing parent by ensuring that there is always someone ready to assist them in case of a fall.
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Your Parent Was Diagnosed With Alzheimers Now What
Every 65 seconds someone in the U.S. develops Alzheimerâs disease, according to the Alzheimerâs Association. That someone could be your parent.
My mom was diagnosed with Alzheimerâs disease at the age of 65. She had been showing signs of memory loss for more than a year, so it wasnât difficult for me to accept the diagnosis. What was hard, though, was knowing what to do next.
The one thing I did know was that I was going to have to be the one to take care of her. She was living on her own because she and my dad had divorced, and my only sibling lived several states away. Fortunately, as a personal finance journalist, I had a good idea of what financial steps needed to be taken. Beyond that, thereâs been a lot of trial and error on my part during the 11 years since my momâs diagnosis.
Hereâs what Iâve learned and what you should know if your parent is diagnosed with Alzheimerâs disease.
Gather Information About Your Parents Finances
If your parent names you power of attorney and you will have to handle money matters as your parentâs memory declines, you need to gather as much information about your parentâs finances as soon as possible. Otherwise, youâll have to play detective as your parent forgets more and becomes confused.
Let your parent know that itâs important for you to have the following information so youâll be able to help:
- A list of monthly bills and how they are paid
- A list of financial accounts, account numbers, usernames and passwords
- Types of insurance policies, names of companies that issued the policies, how premiums are paid
- Types and amounts of household debt
- Personal information such as Social Security, Medicare and driverâs license numbers
- Location of tax records
- Names and contact information of financial and legal professionals your parent works with
- Final wishes for funeral and burial
If your parent is reluctant to give you this information in the early stage of Alzheimerâs, ask that he write it down for you. He could store that list someplace safe, tell you how to access it and agree on a point when you would be allowed to access it.
According to the Alzheimerâs Association, those with Alzheimerâs say that having people who reassure them that they will be there for them can help with the process of accepting a diagnosis.
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Please Note This Information Is For People Based In The Uk
I didnt join Medium to talk about caring for elderly parents, but its difficult to talk with passion about working in tech when you have bigger things on your mind.
If you are reading this because you have someone close to you with dementia, I am sorry. I will do my best to make your life a tiny bit easier with the information below. I could go on with lots of platitudes about how I know how you feel and how upsetting this is, but if youre anything like me, you just need really easy steps to follow that your crowded mind can take in.
If youre anything like me, you just need really easy steps to follow that your crowded mind can take in.
Ill tell you a little bit about my situation before I go on, as my advice is based on this experience. In 2017, both of my parents were diagnosed with vascular dementia. We have known that my mum has had memory problems since late 2014, and have been focussing on her ever since. The big shock came in October this year when we found out that my dad has had it for many years undiagnosed . The news was heartbreaking. It turns out he has much worse dementia than my mum when we thought he had depression . They are both in their mid-seventies and live in the home they have shared since they married fifty one years ago. At thirty four years old, its pretty unusual to have two parents with dementia.
Its still early days for us, but I have a little bit of wisdom to impart if you are at the start of your journey.
A Dementia Or Alzheimers Diagnosis Isnt An End Its A Beginning
To be sure, its the beginning to a challenging chapter. But, by taking these four steps to set affairs in order and arrange for memory care, you and your parent can alleviate some of the worry and focus on enjoying the time you have together.
You can download our Dementia Guide. We’ve created this Dementia Guidebook as a resource for caregivers of people living with memory loss, to help you help your loved one age as successfully as possible.
You can also download our Financial Answers Decision Guide to help you plan for the costs of care. Marjorie P. Lee Retirement Community has decades of experience in handling this disease. And were here to help you.
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Help Your Parent Stay Social
Alzheimers disease is a debilitating illness that will cause your affected parent to lose all cognitive abilities and memory over time
Letting the patient deal with the condition alone can hasten its progression.
Whatever your parent likes doing, chances are theres a club for it.
From embracing favorite past activities to seeking new interests, the more you can encourage your parent to mix with others, the better.
Ask Your Loved One How She Feels Her Memory Is Working
Some people are aware of and worried about their memory. They may have noticed some lapses and might be relieved to talk about it. Others, of course, may become angry, defensive and deny all concerns. Knowing your loved one as you do, you can consider if a direct and gentle approach would be effective or not.
When you talk with your family member, be sure to choose a good time of day and use “I statements” such as, “I’m a little worried about you, Mom. I’m wondering how you’re doing. I thought I noticed you have a harder time lately with your memory and wondered if you’ve noticed the same thing.” This approach can decrease someone’s defensiveness and is generally more effective than a statement like this: “You seem like you’re having trouble with your memory.”
You also might want to avoid using the “Alzheimer’s” word for now since it’s not known if your loved one has this diagnosis or not. Consider instead using words like “memory problems.”
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