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9 Types of Issues to Address When Helping Older Parents

by Leslie Kernisan, MD MPH 42 Comments

Aging Parents To Do List Most older adults don’t need much help from others.

In fact, many of them are quite busy assisting others and otherwise contributing to their families, communities, and/or workplaces.

But of course, many older people eventually do need some help from others, especially if they live into their 80s, 90s, or beyond. After all, only a minority of people transition from being fully independent to deceased, with no intervening period of needing assistance.

(Wondering how to get an older person to accept help? That’s covered here: 6 Steps to Take When Aging Parents Need Help – Even if They’re Resisting.)

When an older person does start to need help, it tends to be close family members — assuming the person has family —  that step in: spouses, adult children, siblings, nephews or nieces, grandchildren, and so forth. In fact, family members are by far the number one source of “long-term care supports and services” for older adults.

Sometimes providing this eldercare support can be fairly straightforward: a little help with transportation, or arranging for some assistance with shopping or household chores.

But in other cases, family members find themselves having to take on quite a lot. This is often due to health issues affecting the older person’s ability to remain independent and manage various aspects of life.

Some situations that commonly bring this on include:

  • An older person starting to develop dementia, such as Alzheimer’s or a related condition
  • Advanced chronic illnesses that limit daily function and/or cause frequent hospitalizations, such as advanced heart failure, advanced chronic pulmonary disease, or a progressive neurological condition
  • Sudden disability after a fall, stroke, or other health emergency
  • Difficulty recovering from a hospitalization, especially if the older person experienced delirium or other complications
  • Advanced age, which can eventually bring on general frailty and loss of physical strength. Very advanced age also tends to bring on more noticeable age-related cognitive changes, and is a strong risk factor for developing dementia as well.

Most people are happy to be able to help an older parent or other loved one in need.

But it’s also common for people to find it…difficult. Especially when the older parent is reluctant to accept help or make changes. (Which is probably the norm rather than the exception.)

Trying to help an older parent tends to bring up lots of different issues that people haven’t prepared to address. And many people must continue to tend to their jobs, children, and other responsibilities, as they also start trying to figure their new caregiving role.

Over the past several years, both in my in-person doctoring work, and as an aging health expert writing online, I’ve seen countless people struggling to sort out just what their older parent might need help with, and how to help.

So in 2019, I created an online program to help people with this: the Helping Older Parents Membership.

As part of the related Helping Older Parents Course, I created a list of the key domains that family caregivers usually have to address at some point.

Since most of our members find the list really useful, I thought I’d share it below.

9 Domains to Consider When Helping Older Parents with Elder Care

Here are nine types of issues that tend to come up, when helping older parents.

  1. Helping with Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs)
    • These are key daily life tasks, which I describe in more detail here: What are Activities of Daily Living (ADLs) & Instrumental Activities of Daily Living (IADLs)?
    • Older adults often first need help with IADLs, which include things like managing transportation, finances, shopping, home maintenance, and meal preparation.
    • An older person’s need for assistance with ADLs and/or IADLs often determines what kind of care arrangements or housing arrangements a family might consider.
  2. Safety issues
    • This includes addressing issues such as financial vulnerability (or even exploitation), falls, driving concerns, and more.
  3. Medical and health issues
    • Medical concerns are fairly common in late-life. Many older adults have chronic conditions that require medications, monitoring, and other forms of ongoing management.
    • Older adults may also develop new symptoms or health concerns, and may need their family’s assistance in getting evaluated. Family members often help bring up questions and concerns to the health providers.
    • Most people will also need help when recovering from an illness.
    • Serious illness or certain chronic conditions can cause older adults to lose the ability to make their health decisions or oversee their own medical care. Family members must often make decisions due to a health emergency or mental decline.
  4. Legal and financial issues
    • Some older adults may lose the capacity to manage certain types of financial or legal affairs.
    • Even cognitively-intact older adults are vulnerable to financial exploitation.
    • Family members must often consider assisting with legal and financial issues.
    • Planning ahead and completing the necessary legal paperwork can make it much easier for a family to assist, if/when it becomes necessary.
  5. Housing issues
    • An older person’s housing situation often affects quality of life, safety concerns, the ability of others to provide assistance, and more.
    • Families must often consider questions such as:
      • Is the current housing situation a good fit for “aging in place”?
      • Is a more supportive environment, such as moving in with a family member, potentially necessary?
      • What other options (e.g. assisted living) would be financially viable, and could be considered?
  6. Quality of life and helping your older parent thrive
    • Beyond meeting basic needs, most families are also concerned about their older loved one’s quality of life.
    • This means considering issues such as social connectedness, purpose, autonomy, and dignity.
    • It’s also essential to learn more about what matters most to the older person, and what kinds of things they consider less important or would be willing to trade-off.
  7. Planning ahead 
    • Things to plan ahead for include future declines, emergencies, and end-of-life care.
    • Planning ahead tends to reduce later stress, hassles, and sometimes expenses.
  8. Managing relationships and family dynamics
    • Trying to help an older parent often brings on relationship challenges and difficult emotions.
    • Well-intentioned people often inadvertently treat older relatives in ways that threaten their autonomy or dignity, or otherwise strain the relationship.
    • It’s also common for family caregivers to experience relationship challenges with siblings, a caregiving parent, or others who are involved.
    • Most people benefit from learning and practicing better communication skills, to better manage these relationship dynamics.
  9. Self-care
    • Helping an older parent is rewarding but can easily become a source of chronic stress.
    • Because family caregivers are often busy, they can easily neglect their own needs and wellbeing, which can jeopardize their own health, and also affect their ability to care for and connect with their older parent.
    • Family caregivers can use a variety of self-care strategies to keep their caregiving strain manageable. These include joining a support group, asking for help, setting boundaries, allotting time to tend to one’s own health and other needs, and more.
    • I’ve also found that family caregivers can benefit from learning strategies to organize and prioritize what they are working on.

As you can see — and as many of you already know from personal experience — helping an older parent in late-life can be a pretty complicated endeavor.

This is in part because all the above domains tend to interact and overlap with each other. Some examples:

  • An older person’s medical situation often affects their ability to manage ADLs and IADLs, and their caregiving needs.
  • The intensity of the medical situation also affects how much time an older person and their family spend with health professionals, which affects everyone’s quality of life.
  • A family’s legal permissions to assist determine how easily they can help with medical issues, housing issues, financial issues, and more.
  • Relationship dynamics — and a family caregiver’s self-care — affect caregiving stress, which then affects one’s ability to help a parent, and the type of energy and patience one is able to muster when communicating with others.
  • Sorting through decisions — whether about safety, medical, housing, or anything else — should always involve considering the older person’s quality of life and what matters most to them.

And so forth.

Are you currently trying to help older parents?

If so, I hope you’ll find this list useful.

There is a lot on it, but with some persistence, you’ll eventually sort your way through it all.

Just don’t forget to address your self-care, ok?

And, if you’d like to get some extra help and guidance, then I hope you’ll consider joining us in our Helping Older Parents Membership Program.

I’ve created this online program as a way to provide people with the ongoing support and guidance they’ve been asking me for.

It includes ongoing Q&A sessions with me, plus I’ve been able to recruit some very experienced geriatric care managers to assist our members as well.

Here’s some of the feedback we’ve gotten from our members so far:

“This has been an incredible program!!! I only wish I would have found this about 3 years ago when I was first getting deeper into the healthcare/cancer journeys with my parents.
I learned a lot about re-framing my role, setting some limits, and letting go of guilt.
” — M.D.

“It has helped normalize many of my most difficult feelings around caring for elderly parents. — J.M.

“This membership has been a wonderful touchstone, for emotional as well as practical support. It has helped me understand that even though I can’t “fix” everything, that I have a resource that I can tap into and consult to help with decision making. Dr. Kernisan has helped me gain a better perspective about what is possible and what may not be possible in caring for our parents. She has helped me learn to be more forgiving of myself and my siblings, and to remember that we are all doing the best we can. — D.B.

If the Helping Older Parents Membership sounds like it could be helpful to you, sign up to get updates here.

This unique membership includes live Q&A calls with me, help from geriatric care managers, online lessons, resource lists, cheatsheets, and more, all designed to help you better connect with your older parent, better understand how you can help them, and actually get things done.

Otherwise, if you have any suggestions on how people can better navigate helping an older parent, eldercare, or if you simply want to share thoughts on this topic, please post in the comments section below!


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Filed Under: Announcements, Geriatrics For Caregivers Blog, Helping Older Parents Articles Tagged With: aging parents, family caregiving

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Comments

  1. netmouse says

    September 8, 2018 at 6:58 AM

    It’s all about family. The growing number of those without someone able or willing to help are ignored. And the bootcamp issues show how intense and involved care is.

    Reply
    • Leslie Kernisan, MD MPH says

      September 9, 2018 at 10:20 AM

      It’s true that family members are by far the most likely to be willing and able to step in and assist an older person, if it becomes necessary.

      I have also seen friends take on this role…some manage quite well, others become overwhelmed by the responsibility. Frankly, I think most people have no idea what they might be getting into, if they agree to become a friend’s durable power of attorney for general affairs or medical care. This is may be in part because people themselves may not be sure what their family or friends might have to manage on their behalf, hence it is hard for them to plan ahead and try to provide some guidance in advance.

      It is a HUGE problem that as a society, we don’t have better ways to support those many older adults who are don’t have family or other close friends available to assist. We should really address this; there are efforts underway but more needs to be done.

      Reply
      • Brenda kelly says

        September 21, 2019 at 11:55 AM

        My biggest fear is my husband and I have 2sons we live in mo.my husband’s son lives in Eugene or. My son is married and have us 2 beautiful grandchildren. So we don’t know what we are going to do feeling like we are so by ourselves and we don’t want to be a burden when it is our turn to have care.they all have jobs. We have always took care of ourselves and still do! What can we do to make us feel like not worrying so much! Thank you an I love reading your articles.

        Reply
        • Leslie Kernisan, MD MPH says

          September 23, 2019 at 9:39 PM

          Thanks for sharing these thoughts. I have found that people do often struggle to help aging parents, but much of that is because their aging parents weren’t very proactive and didn’t do nearly enough to plan for their late-life needs.

          So, I would encourage you to start a process of having conversations with your sons and trying to plan ahead. Try to not get too caught up in the fear of being “a burden.” If you end up needing help, yes your children will have to step up in some way, and that will take them time and energy. But that’s ok! Your job is not to protect them from ever having to exert an effort to help you, it’s to do what you can to make that effort easier for them.

          You can use those 9 domains to start thinking and planning. If you or your husband needed help with daily life tasks, how might you get the needed help? Could you get help in your home, or would you move? Is your current home “future-proofed” so that it’s easier to remain even if you develop physical or mental limitations?

          Regarding medical care, have you talked to your sons about your medical care and started to get them involved? Do they know what matters to you? And so forth.

          We actually have a nice podcast episode with family caregiving expert Janet Benvenuti, in which she explains how her parents laid groundwork that made it easier for her to step in and help them: 036 – Interview: Minimizing Family Conflicts & Supporting Aging Parents.

          I hope this gives you some ideas. Every bit of thinking ahead and planning ahead you do will be hugely helpful to your sons. Good luck!

          Reply
  2. Rose says

    September 8, 2018 at 9:18 AM

    Almost all articles such as this one are addressed to FAMILY members (children) and deal with actions they might be called upon to take. We are faced with almost no family members to call upon for help. We would appreciate advice such as the best way to arrange for financial matters to be handled, including such matters as paying bills. In this regard, all we’ve found are bank trust departments, which are not truly part of the bank, take one percent per year for costs, and want to make investments on our behalf (read broker’s fees). Other than legal documents such as wills, we wonder if there are other plans we should be making, what government/social welfare programs may be in place, and any other suggestions that have proven to be helpful. While we have friends who will assist us in emergency situations, they are already burdened with family responsibilities of their own, and of course health problems. Any comments would be appreciated.

    Reply
    • Leslie Kernisan, MD MPH says

      September 10, 2018 at 4:24 PM

      Thanks for this comment. I agree that there is a need to provide older adults with more information and guidance as to how they can help themselves, and plan for the issues I list in the article.

      I don’t yet know enough of the answers to your questions to provide much advice or write articles on this subject. In my clinical work, when I work directly with older adults it is mainly to focus on their medical care, not on helping them manage their finances. In advising adult children of older adults, I point out that they need to address financial issues, and I am sometimes called upon to render an opinion as to the older adult’s capacity to manage finances. But the work of exploring options for managing finances is usually done by others (e.g. social workers).

      I would like to eventually learn more about possible answers to your questions, but my time is limited so I’m not sure when I’ll be able to do so. Some general advice I can share for now would be:
      – It’s generally recommended that older adults simplify their finances, and take steps to reduce the risk of exploitation. I offer tips specifically for older adults (to reduce the risk of financial exploitation) in this article: Financial Exploitation in Aging: What to Know & What to Do

      – In California, where I am licensed, we have professional fiduciaries that can be hired to oversee finances or step in, in the event of incapacity. Different states will have different options available.

      – Social welfare programs are often quite different based on location, so again, this requires local research or talking to a knowledgeable person in your area.

      – Financial products can be very complicated, e.g. long-term care insurance, annuities, etc.

      Honestly I think it is hard to move forward without finding expert advice, and even determining which local financial advisor really knows their stuff is probably a challenge.

      Sorry that I cannot offer an easier solution. Good luck and take care!

      Reply
      • Linda Fodrini-Johnson says

        February 22, 2019 at 1:56 PM

        As a professional Aging Life Care Manager I work as do fellow members of the Aging Life Care Association with individuals who don’t have children or family to call upon design plans to secure they have the aging journey they wish with the experts and advocates necessary to make that happen. We explore your values, wishes, financial resources and give you ideas for your legal documents, housing choices and whom to call upon for advocacy – such as professional care managers/Aging Life Care managers, fiduciaries, elder law attorneys.

        I teach from time to time a workshop called “Over 60, single or without family”: Putting a plan together to have life your way!

        Reply
        • Leslie Kernisan, MD MPH says

          February 22, 2019 at 2:48 PM

          Thank you Linda for weighing in!

          Yes, Aging Life Care Professionals (formerly known as certified geriatric care managers, right?) are a wonderful resource and more people need to know about them. I’m glad to hear you’ve developed a workshop specifically for older people who don’t have children.

          Reply
          • Lori Jurgiel says

            September 21, 2019 at 9:37 AM

            Yes, the Aging Life Care Association was formerly known as NAPGCM (National Association of Professional Geriatric Care Managers) prior to 2015 when we rebranded our name to include our wider recipients of care as most of us advanced professional members are qualified to serve disabled persons and their families too. Not everyone realizes this about our certifications. I would like to mention too, having an ALCA professional who is a local expert helps many adult children who living close by or who are not living near their loved ones, or might be sandwiched by multiple generations of care needs simultaneously. Lori Jurgiel

          • Leslie Kernisan, MD MPH says

            September 23, 2019 at 9:31 PM

            Thank you!

  3. genie deutsch says

    September 8, 2018 at 6:28 PM

    I am the older parent who at 86 is trying to decide where and when to move to a different location. I wish you would address this situation in a future email

    Reply
    • Leslie Kernisan, MD MPH says

      September 9, 2018 at 10:24 AM

      Thanks for bringing this up. Yes, I’m aware that many older adults are trying to decide whether to move, and otherwise looking for help in addressing current and future age-related needs. I’m still trying to figure out how to address this need, part of the problem is that there is no easy answer to give to people!

      Older adults certainly could use the list above to consider their options for getting assistance on various fronts, should it become necessary. It could also be used as a list of things to plan for/anticipate.

      Reply
  4. Ester says

    September 10, 2018 at 5:59 AM

    Am interested but leaving for a vacation by the end of September. Will only be back middle of December. Could I still enroll ? Thanks!

    Reply
    • Leslie Kernisan, MD MPH says

      September 10, 2018 at 4:28 PM

      Thanks for your interest in the Bootcamp program. All the live calls are recorded and it’s possible to submit questions by email beforehand, so I suppose you could enroll even if you won’t be able to join any of the calls in person.

      Alternatively, within the next few months, I am hoping to create a “lite” version of the program that doesn’t involve weekly calls and is less dependent on my availability and schedule. That might be a better fit for you, if you will be traveling a lot this fall.

      Reply
      • sharon says

        March 2, 2019 at 2:18 AM

        Is the bootcamp directed at USA residents only? I live in South Africa and the legal, medical and financial laws and support for older citizens is very different.
        I care for my 90 year old mother-in-law in our home and am the sole caregiver.
        Sincerely
        Sharon

        Reply
        • Leslie Kernisan, MD MPH says

          March 2, 2019 at 12:40 PM

          Hello and thanks for your interest. The Bootcamp is being reissued as the Helping Older Parents Essentials Course. I would say that probably 80% is useful to people caring for aging parents no matter where they reside, because most of the challenges families encounter are fairly universal, and many of the core approaches I teach can be used regardless of where one lives.
          But it’s true that when it comes into tapping into available resources to support older adults, navigating the health system, legal options for intervening or advance planning, all of those differ in different countries. So I would say that our membership community will be most useful to people residing in the US, but should be valuable to people from other countries as well.

          I am offering a related free webinar next week: How to Help Your Older Parents Address Health & Safety Issues, Even if They’re Resisting Your Help
          and then we will be opening up enrollment for the membership right after that. You would be very welcome in our community, but of course we would not be able to help you tap into whatever is available to help you in South Africa.

          Reply
  5. Karen Mitchell says

    September 10, 2018 at 11:10 AM

    My clients and their family members find that using a FREE senior housing locator service like Assisted Living Locators is extremely helpful when the time comes to begin discussing additional help at home such as home health care or home care, adult day care, or contemplating a move to an independent living, assisted living, or memory care community or assisted living home. We walk thru this journey with our clients and help with many resources along the way, often spending more than 20 hours with them. Most of us keep in touch afterwards, too!

    Reply
    • Leslie Kernisan, MD MPH says

      September 10, 2018 at 4:31 PM

      Thanks for this comment. I know some people find such services helpful, and others less so. It seems to depend on the particular service, the people involved, whether the service has any incentive to recommend particular facilities (fairly common with free services), etc.

      Agree that in general, it helps to get advice from people who have expertise in whatever issue one is trying to troubleshoot, whether that’s housing, medical, legal, and so forth.

      Reply
  6. Linda Meneken, PT CAPS says

    September 12, 2018 at 2:01 PM

    There are Geriatric Care Manager consultants in the SF Bay Area; also contact a good geriatric social worker (Meals on Wheels Diablo Region or in Alameda county both have excellent referral sources for older adult life care issues).

    Reply
    • Leslie Kernisan, MD MPH says

      September 14, 2018 at 5:05 PM

      Yes, geriatric care managers — also now known as Aging Life Care Professionals — can be an excellent source of advice and support for families.

      I also always encourage people to contact their local Area Agency on Aging, and the Family Caregiver Alliance’s website has a nice navigator feature to help people find local resources as well.
      FCA Navigator

      Reply
  7. Nancy Doniger says

    September 19, 2018 at 6:07 AM

    I have been trying to find a good geriatrician in south Florida near zip 33067. The link you provide came up with no one. Advice?

    Reply
    • Leslie Kernisan, MD MPH says

      September 21, 2018 at 8:48 PM

      It is often hard to find a geriatrician; there are not many of us available to take new patients.

      I have suggestions on finding geriatricians here: How to find geriatric care — or a medication review — near you.

      Good luck!

      Reply
  8. Laura says

    November 7, 2018 at 10:33 PM

    I think we are regularly informed of the cognitive and memory related signs and symptoms buy don’t always end up realizing there are many other important things to address. Thanks for mentioning them all!

    Reply
  9. Tracy Stewart says

    January 24, 2019 at 11:56 PM

    I very much enjoyed reading your article. I suffered from a situation of obligation to my elderly mother after her husband, my stepfather committed suicide from Appears to have been a depression from dealing with caregiving to her and her many years of serious diverse illnesses. When he died, I was the only person, other than my husband, who was there to help her. I spent over 6 years trying my best to assist her from a distance. It was so very challenging and I always put her needs before mine or my husbands or family. This took a terrible and immense toll on me and my family….and she eventually became an opioid addict along the way. I finally after a terrible depression and emotional breakdown left this relashionship. She is now living in a senior community and can hire help, she has financial security, and what’s sad is that she put me through absolute hell. I am sad about this elderly care situation and that I became a victim in what her old age Journey was, I tried my best to help her, but the drugs changed her and it was bad.
    I can not get my years back, but I actually regret those years with her.
    I think this site should empower the caregivers to step away when the situation gets toxic. Older people can become very difficult and selfish, and that is not actually fair or healthy for the rest of the family.

    Reply
    • Leslie Kernisan, MD MPH says

      January 28, 2019 at 5:49 PM

      Glad you enjoyed the article and thank you for sharing your story. So sorry you had to go through such a difficult experience. I completely agree that it’s important to help family caregivers realize when a situation has become too toxic or hazardous to them. We want to help family members and others, but ideally not sacrifice our own health or financial stability to do so.

      We are actually in the process of creating a membership community, to help people navigate these issues related to helping their older parents. I hope we’ll be able to help people some of the excruciating dilemmas that you went through.

      Reply
  10. R. Diane says

    February 22, 2019 at 12:54 PM

    Your articles are so very helpful. I live in the in between area of having an older husband (85) who is ageing with several serious medical problems and my own medical issues, e.g., cancer in remission, which are perhaps characteristic of many women and wives my age (72). My own parents are dead and I took care of my mother for only a short while at the end of her life because she died quickly. My husband and I have no children and no outside family still living. There are good close friends but they are ageing too. With my husband’s recent heart attack and prolonged stay in rehab, I have finally begun to feel like I am caring for a parent because he has lost so much capacity for independence. Among other things, he’s lost his vision. We live in our own home and I am keeping up but some days are fraught. I am a very capable person but I have so much to keep track of and I feel deep sadness at my husband’s physical decline. Honestly he can’t bear the help of anyone but me. I am not asking for individual advice. I merely want to acknowledge how your thoughtful responses to the questions of many others give me heart to persevere and keep seeking solutions.

    Reply
    • Leslie Kernisan, MD MPH says

      February 22, 2019 at 2:02 PM

      Thank you for your comment, I’m so glad you find the articles useful and especially delighted if this site is helping you on your caregiving journey. It is not easy to support an older spouse, in truth I think it’s often more challenging than helping an older parent.

      Please be sure to find ways to take care of yourself, as you help your spouse. If you aren’t already part of one, I would recommend joining an in-person or online group of people caring for an older spouse. It’s important to have a safe place to process sadness and other difficult feelings, plus they will help you think through whatever you’re facing. Good luck and take care!

      Reply
  11. Kate says

    March 14, 2019 at 8:28 AM

    Elders can also get help from neighbours and friends not only from family members.

    Reply
    • Leslie Kernisan, MD MPH says

      March 19, 2019 at 5:42 PM

      Very true! Many older adults are benefiting from the help of neighbors, friends, and other “non-relatives”.

      That said, certain forms of commonly needed care are really difficult for anyone other than family to provide. (And, family tend to find it difficult too, but they persist due to a sense of obligation, love, or some other relationship-based motive.)

      Reply
      • Winifred says

        August 5, 2019 at 3:59 PM

        Do they, my family helpful when my elderly mother has been home if she goes into hospital I am left with washing, cleaning etc & I work full time they never think to make me a meal or offer to do the washing or put the vac thru if they do it either doesn’t happen or they take washing home & don’t return it I WOULD RATHER PAY someone to do this thats not family & know they would come when they say & if u want a meal u have to ask yourself to go to their place surely they could do so.e meals & put in freezer neighbours are hopeless

        Reply
        • Leslie Kernisan, MD MPH says

          August 16, 2019 at 6:17 PM

          Sorry for delayed reply, we had a glitch in our system that we have just resolved.

          It sounds like you would like more help from your family when your mother goes into the hospital. It might help if you request a meeting to talk about how things are going and what you would like to request from them. It’s important to frame these requests constructively; you may be thinking “that’s not family” but it’s probably not going to help to say that out loud.

          I quite like the book “Difficult Conversations: How to discuss what matters most” as a resource to prepare for a better conversation with family. Good luck!

          Reply
  12. Gloria Hansoon says

    September 21, 2019 at 3:48 PM

    Thank you so much for this opportunity to receive this information! I am 82 yrs.; lost my husband 6 yrs. ago, no family & dr. told me I have Alzheimers !
    I appreciate to learn more about aging! Thank you!

    Reply
    • Leslie Kernisan, MD MPH says

      September 23, 2019 at 9:44 PM

      Thank you for your comment. I’m glad if the information here is useful.

      If you have been told you have Alzheimer’s, I want to encourage you to find a support group for people diagnosed with dementia. Getting moral support is helpful and also a group can help you do some planning ahead. Especially if you are widowed and have no family, it will be important for you to figure out who might be able to step in and help you make decisions when your Alzheimer’s progresses. Sometimes people realize they have distant family; other times, people turn to friends. In some states you can also hire a professional fiduciary.

      Good luck and take care!

      Reply
  13. Debra Williams says

    December 26, 2019 at 12:32 PM

    Hi Lesley

    Both my sister and I were told in our late 40’s that we have extensive SVD. There was initially interest from one Neurologist, but that has came after a year.

    I am 57 now and my sister is 49. Apart from myself having worsening major depression and my cognitive score being 26 we are not recieving any treatment or advice to protect us from things like stroke, we are not belng checked for progression. Basicly we do not know what to expect or what we and family members should be doing to help ourselves.

    My husband has recently had a minor stroke and is receiving lifelong treatment so the risk of another stroke is monitored. Am I correct in thinking that my sister and I should be treated in a similar way. Should we be concerned and be looking for a specialist to monitor us going forward?

    Any advice would be greatly appreciated.

    Regards
    Debra

    Reply
    • Nicole Didyk, MD says

      December 29, 2019 at 2:08 PM

      Hi Debra. It’s understandable that you’re concerned about the diagnosis of “extensive SVD” in you and your sister. The BHWA website has some excellent resources about SVD, or cerebral small vessel disease, including this podcast. In general, controlling risk factors for stroke, like high blood pressure, diabetes, high cholesterol, smoking, and sedentary lifestyle, can help to prevent progression of the small vessel changes.

      It’s important to talk to your doctors about what your risk factors are, and the best way to deal with them. In terms of “monitoring” most family doctors take the lead with checking in on those risk factors that I mentioned as part of a preventive health screening program. The treatment that your husband is on may not be right for you, so check with your health team before making any drastic changes.

      Reply
      • Debbie Williams says

        January 5, 2020 at 4:56 AM

        Thank you so much Nicole. I think you have helped me to put some questions on paper to take along with me on my next visit to my GP

        Reply
        • Nicole Didyk, MD says

          January 5, 2020 at 1:16 PM

          I’m so glad you found the suggestion helpful!

          Reply
  14. Lynelle D Johnson says

    January 23, 2020 at 8:08 PM

    I really appreciate your article and expertise. Unfortunately we (my two bothers and I) are in a difficult and complex situation with our step mother, and I didn’t find the resources to be helpful in our situation. We are still quite confused on what to do with and about our step mother. (Let’s just call her “Ruby”, not her real name, for our purpose here and to protect her identity). Our father died 6 years ago. “Ruby” never came to the hospital or rehab or even his funeral service! After dad passed we did our best to reach out to “Ruby’s” natural children (she has 4 children). We were only able to reach one daughter on the east coast. She expressly said she wanted nothing to do with her mother.

    Ruby’s last rent check bounced. She pays us and we pay the rent. (A mobile home in a park). The home belongs to dad’s estate. She lives in the Bay Area–housing is crazy expensive! Clearly she can’t afford to live anywhere else. Her rent now is $1200 per month. She gets meals on wheels weekly. No one wants her. She doesn’t shower or bathe. She never leaves the house. Basically we’ve been told “she’s not a danger to herself or anyone else” so there really isn’t anything we can do. We’d like her out of the house so we can sell it, but we can’t just kick her to the curb. None of us live close by. My brothers both live over 300 mile away, and I live 700 miles away.

    Would you please send some information or resources? We desperately need help for both her and ourselves.

    Reply
    • Nicole Didyk, MD says

      February 3, 2020 at 12:03 PM

      Hi Lynelle and sorry for the delay in replying (I will blame technology for that!). What a difficult situation you describe, and it sounds like you are at a bit of an impasse as long as “Ruby” is not in imminent danger. It sounds like the three of you stepchildren need to come to a consensus about how to move forward, and unfortunately, it is most likely to be some version of “kicking her to the curb”, or tolerating the situation until something changes and there is no option but for her to move to a more supportive setting. A Geriatric Care Manager could be the professional to help you navigate the system and find a way to make some progress. This podcast may also be helpful. Best of luck.

      Reply
  15. john says

    April 22, 2020 at 7:10 PM

    thanks

    Reply
  16. Jenni says

    March 2, 2021 at 2:38 AM

    Good Day Leslie, thank you for sharing, albeit 2018, a few yrs ago, and do not know if u will still reply in 2021.

    I am resident in South Africa and have not been able to find anything that addresses an ageing parent (mine) who has been diagnosed with dementia and is married to his second wife and trying to make decisions for him going fwd, and trying to include us siblings. What are our legal and social rights in terms of final decisions for our father, does she have final say? Or, if you could refer me to a an association, group, etc in SA that I could talk to.

    Please let me know, if yoy can, would be greatly appreciated

    Jenni

    Reply
    • Nicole Didyk, MD says

      March 3, 2021 at 6:43 AM

      Hi Jenni and thanks for your comment!

      I don’t know too much about the legislation capacity and power of attorney in your region, but I found some links that may be helpful:
      Alzheimer’s South Africa is dedicated to supporting those living with dementia and their families: https://alzheimers.org.za/
      Dementia SA is a resource for those with limited access to private health care: https://www.dementiasa.org/

      You might find this article helpful, although it’s written from an American perspective.

      I hope that helps and thanks again for visiting the blog!

      Reply

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