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New book helps families who are struggling to care for their aging parents
Anne - 05-Feb-10 14:36 Taking_care_of_you
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They're your parents too! How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy
This book by Francine Russo delves into the family dynamics that can create havoc as adult children come together to care for their aging parent(s).
“Siblings tell researchers that their siblings, (in a caregiving situation), are their greatest source of stress.”
If it feels like you are re-living your childhood all over again when you thought you had healed those wounds – you are not alone. This book explores how (and why) the old patterns of a family unit play into the care of an aging parent, and how you can use the experience as an opportunity to heal. This book is full of real life family stories, research and practical advice for siblings who must know that it shouldn’t have to be this hard.
I had the opportunity to interview Francine after reading her book – the interview follows this quote from Francine:
“People need to realize that this period where parents are aging and require care is not just a time of very challenging practical- demanding needs, but people will be helped by understanding that this is a family psychological and emotional passage for everyone in it. Recognizing this will help in dealing with the practical side so much better.”
Anne
When I first read the title, I assumed that you had been the hands-on caregiver - with a need to vent about what your other siblings did not do......but really the opposite was true – you were the long distant caregiver who was resented by your sister – the more direct caregiver. I understand from the book that you are still working to heal your relationship with your sister. How did that happen?
Francine
I did get to speak with my sister. I made a profound apology to her. Feeling terribly ashamed, I drafted and re-drafted an apology in my head. One day there was an opportunity and I apologized and she accepted. She admitted she didn't actually want my help. But during her high stress moments, people would say - do you have any siblings? She would respond “I may as well not have.” And the resentment grew from there.
Anne
What is the one thing you would have done differently...knowing what you know now?
Francine
Given her emotional support - which would have required changing our lifelong relationship. I wasn't in the habit of communicating with her very often. We got our news of each other through my Mom.
I learned that so many caregivers did not want help - they don't know themselves what they want but they do all want to be appreciated, valued and to not be alone.
I would have called her once a week - how's it going? How are you doing? In my family we had a habit of making one another guilty. I would have thanked her and shared my appreciation. Then I would have asked – “what would you like me to do?”
Anne
In the time of your caregiving, would you have picked up this book and read it?
Francine
I wonder that myself. I think I might have heard it as accusatory since my sister said it often. But the sub-title implies that it is part of a conversation. How siblings can survive the situation. If I looked a little further I think I would have read it.
Anne
What is the most important message you would share with a family caregiver who is struggling to "get" another family member to be more involved?
Francine
Insight is key. It really helps to think about the family and your interactions with them. This is where siblings have to start. You have to ask in a way that will get a positive response. If you're pissed off at your siblings - that will come across and reduce your chances of getting a yes. Think about the fact that they don't know what it's like for you.....and you don’t know what it’s like for them. Don't use a list of "should's". Everyone has a different relationship with their parent....none of us have a model for how to do this. If you are not having success in communicating, work with a professional to help find a better way to say what you want to say.
Anne
I have worked with many caregivers over the years and I've interviewed and surveyed many former caregivers - all the former caregivers say they wish they had asked for help sooner, taken better care of themselves etc. What do you think it will take to get that message to caregivers who are in the middle of it right now?
Francine
Many family caregivers think they are alone, that they will manage – but this is something they have to prepare for.
There needs to be significant outreach. Professionals need to express very strongly that as parents get to an age where something might happen, it is time to sit the whole family down together and decide how various situations will be handled when they come up. If the family doesn’t feel they have the information or the emotional strength to manage it themselves, they should have a professional run the first meeting.
Anne
Is there anything else you would like to add?
Francine
I am hoping people will read the book before the caregiving begins or gets intense – that when people read this they will be able to shift their perception sooner and not feel dumped upon. Besides the issue of caregiving, there are many emotional flash periods. The dynamics of who and how the power of attorneys are chosen both financial and medical. Dementia poses very specific challenges for siblings. There are many opportunities to heal, many ferocious emotions – anger, resentment, wishing for more closeness. If siblings can find ways to re-connect and forgive one another then they may be able to find some joy in this.
Francine
Retelling a snippet of one of the families in her book; Laurie moved back to her hometown to care for her father. She tried to get her brother to be her partner in the way she wanted. One day, when he disappointed her, she ended up hurting herself and as she cried, she had the realization that she was caring for her father and getting a lot of satisfaction from it. She was able to address some old issues with her father and bring healing - these were her reasons for being the caregiver. Once she realized this, she stopped pounding her brother with what he should do and he actually became more helpful.
You can find the book at Francine’s website: www.yourparentstoo.com or on amazon.com
Dementia - not just memory loss
Anne - 27-Nov-09 16:58 Dementia
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People die from Dementia.
Surprised by this? You are not alone. A recent article in Time magazine addresses one of the most significant myths of dementia – it is a fatal disease. People do die of dementia – yet even health care professionals do not always understand this.
It makes sense really – Dementia is a disease of the brain. The brain controls everything in our body. If the brain is shutting down, so eventually will everything else. The article shares a quote form Dr. Claudia Kawas, professor of neurology at the U of California, Irvine. “We forget the brain does everything for us – controls the heart, the lungs, the gastrointestinal tract, the metabolism.”
Understanding this, experts believe, will help families make better treatment and end of life decisions for their loved ones affected by dementia.
Dementia is a category, just as cancer is a category with many specific types of cancer underneath it - there are many types of dementia that fall under the dementia category including Alzheimers disease, Frontal Temporal Dementia, Parkinsons disease and many others.
Because dementia clients are rarely able to make their own end of life decisions, families struggle to know what to do, and according to research – have a tendency to choose aggressive treatment for the various symptoms that arise as the body shuts down, rather than considering palliative care. Some of the symptoms at end of life that are caused by brain failure include eating problems, pneumonia, difficulty breathing, pain, and fever. All of these can be addressed through palliative care to ensure comfort.
Learn more about Hospice and palliative care.
Making the holidays easier for someone with Dementia
Anne - 18-Nov-09 13:30 Dementia
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If you are a caregiver or family member to someone with Alzheimers Disease or other types of dementia, you may already be worrying about how the holidays will affect your loved one. For someone with dementia, over-stimulation can quickly turn into agitation, anxiety and added stress for everyone around.
Here are some tips to make the holidays more enjoyable for yourself, your loved one and the rest of the family.
Be realistic
Many people get very attached to having things a certain way for the holidays. This may not be the year that things can happen as they always have. Try to let go of the need to have everything perfect – and try instead to find a balance that allows you to maintain your self-care and maintain a routine for your loved one with dementia. Evaluate what you can realistically do and what you may have to delegate or do without this year. Maybe the baking can be a family event at someone else’s house this year, or maybe this year’s shopping can be done online.
Explain your plan to family and friends
Most people will understand if they have all the information. Offer a little background about dementia and how someone with dementia reacts to their environment. Share that you have decided to forgo some events this year and be specific about what you need from each person you are reaching out to. See our sample holiday letter
Gatherings
~ Plan smaller get-togethers – having just one family with small children come at a time may be more enjoyable for someone with dementia
~ Invite people over during times your loved one is best able to engage and enjoy the time
Holiday tasks
~ Ask family to help or hire someone to decorate your home
~ Shop online
~ Get packages wrapped by the store or at the girl scout booth at the mall
~ Engage your care recipient at the level they can participate
(signing all the Christmas cards could be a fun task or an overwhelming task – assess how it’s going and let it go if it isn’t working)
Hire a care provider
This can work well for large family gatherings or work parties – allowing you to enjoy the event, with the option of your loved one leaving early. Hire a friend or paid care provider to attend family functions with your loved one. They can remain in the background – assisting when needed, and be available to take the person home when they have had enough.
Holiday letter explaining dementia needs
Anne - 18-Nov-09 13:20 Dementia
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Dear Friends and Family,
This is not your usual Holiday letter – although I am writing with some holiday thoughts.
As most of you know, __________ has been diagnosed with ________________ and I am caring for him at home….and he is in an Assisted Living facility….. What some of you may not know is that Dementia is more than just the loss of memory – it also affects the ability to filter, rationalize, make decisions and control emotions. Because of this, I am being pro-active in how we handle this holiday season. My objective is to keep things as close to our routine as possible, while still being able to enjoy some limited holiday festivities.
Although, ………….still really enjoys visiting with his friends and family, being around too many people at once, makes him/her very anxious. As much as I enjoy all of the parties and events we usually attend – I’m quite certain that they will be somewhat stressful for ………
Here are some ways you can help:
~ Understand that if we attend a gathering -we may need to leave early
~ If you have an extra hour – come stay with ……..so I can shop or attend a party
~ Call first before you stop by with goodies – our life is rather unpredictable right now
~ Explain to the children that if ……… is rude – it is his dementia – not him
(sometimes this one is hard for me to remember myself)
~ Be patient if you notice agitation
~ We love visitors – in small groups
~ Bake an extra dozen cookies – I won’t be baking this year
~ Join me for a couple hours of baking – I get lonely
~ add your own here….
Happy Holidays!
Love,
Getting the support you need
Anne - 13-Nov-09 21:30 Taking_care_of_you
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There are over 50 million family caregivers in the United States today, according to the National Family Caregivers Association. So why - when you first become a family caregiver, does it feel like you are all alone? When you are the first among your friends to begin caring for a parent, or the first of your friends to have a spouse become ill, it can feel like you are the only one who is going through this difficult journey. Most people who have been down the path of caring for another will readily share their wish that they had reached out and accepted help much earlier in their role. This article is intended to help new caregivers learn from their seasoned peers and also offer some suggestions and tools for finding that support.
You don’t need to do this alone
While you may be able to do it by yourself – there is no reason to do it alone. And if you try to do it alone – it will likely have serious implications on your health and very possibly on the care you provide. The stress of family caregiving has been proven to increase the risk of developing a chronic illness yourself – by 50%, decrease the ability for your immune system to do its job to protect you, and increase depression and anxiety.
This is an investment in YOU…..
And the person you care for. Learning how to provide the best care, taking regular breaks from your role and establishing a healthy routine as a caregiver will help you to keep your loved one home longer, reduce your stress and thereby improve your health. How much would it cost if you got so sick you ended up in the hospital? How much money will you save if you can keep your loved one out of Assisted Living or Nursing home care for even six months? The research, coordination and potential added expense of having others help can seem overwhelming – but putting this time and money in now can save you tremendous pain and expense further down the road.
Ask and accept help from friends and family
It is easy to get caught up in the mind set that nobody else can do this as well as me or nobody else really wants to help. Yet most people have a larger community of people very willing and able to help – if you are willing to accept the help. Click here to read more about what friends can do to help
Research what services are available in your community
There is a federally funded Family Caregiver initiative that is dispersed to individual communities. Each community spends these funds in different ways – but most have some free or low cost services available such as friendly visitor volunteer programs, support groups, or resource specialists you can meet with. Call your local Area Agency on Aging (call 1-800-677-1116 to find your local AAA) to find out what services are available
Utilize disease specific associations
Many disease specific associations offer free helplines, information and classes on coping with that particular illness. Search online for associations.
Access a Caregiver coach
There is a new professional - a Caregiver Coach® available for online chat, telephone, face-to face and for special project bids. A Caregiver coach is an expert who can answer your caregiving questions, listen to your concerns and guide you in the right direction. There are many professionals who are focused on the person receiving the care – you need someone who can focus on YOU as the caregiver. Now is a great time to connect with a Caregiver Coach – Toghers is offering our LIVE Caregiver Coach chat FREE for the whole month of November. Chat now
Caregiver Support Groups
There are many different types of support groups and it is important to find one that fits your needs. Some groups are for both the caregiver and the care recipient, some are for a specific illness, such as dementia, some are specifically for spouse or adult children caregivers, some are a mix of both hands-on and long distance caregivers. The members share their successes, encourage one another, brainstorm together to find solutions for difficult issues and share stories and laughter. Learn more about how to find a support group
Utilize tools that help you keep things organized
There are several online tools that are designed to support a family and others who care for another. These sites can be used to coordinate and streamline communication so that you do not have to give everyone updates individually. Some sites we recommend include:
www.caringbridge.org
Bring in paid care providers
There are many options available for in-home, respite or other types of care. Private duty home care can provide companionship, housecleaning, or personal care providers. Adult Day programs offer a social setting for your loved one so you can have some time at home without your care responsibilities.
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