Caregiving Connect

Hi Everyone,My mother is in the throws of mid-to-later stage dementia which hit hard and fast. She is completely unable to care for herself, feeding, incontinence, speech and reasoning all now heavily compromised. I will review responses and links provided here which look very helpful. I am looking for best practices, at-home assistance, and financial considerations for staying at home to care for her. Thank you. 

My mom has Alzheimer’s. I am having a tough time finding someone to come for at least 8-12 hours a day. She is still trying to drive and can’t complete full sentences that make any sense. 

Sometimes as caregivers we feel so unappreciated. Does anyone notice what we are doing? Does anyone care? A little bit of support can go a very long way…What makes you feel supported? What have people done that helped you?  Take care,Amy Goyer, AARP Natl. Family & Caregiving Expert

I’ve been reading a lot of threads here about pharmacies, Medicare letters, rides to appointments and finding help at home. Many of the errands that should be simple end up taking a whole day. I’d love to hear your stories. Think about the last time something like this happened to you or someone you help. What was it, what did you try first, and what finally worked (or didn’t)?

Mom's 82 and lives a few hours away. She's mostly independent so I didn't see this coming, but the admin side of her life has slowly become a part-time job for me. This week alone I've spent an hour on hold with her supplemental insurance about a denied claim I still don't fully understand, two Medicare letters I had to read three times before I could explain them to her, a prescription that ran out because nobody at the pharmacy seemed to know whose job the refill was and a specialist referral that's been sitting in my inbox because I haven't had a clear hour to deal with it.I don't mind doing it. I just feel constantly behind and keep worrying I'm missing something important.How do other people manage this? I tried a shared calendar with my brother but it just became another thing I have to update. Genuinely curious what's worked for you.

Making our own Medicare decisions is challenging enough, and then some of us also help our loved ones choose their Medicare plans (or do it for them). On top of all the other caregiving tasks there can be a lot of pressure around choosing Medicare plans - it’s so complicated and confusing! AARP has resources to help. Check out my post in the Medicare forum here in the AARP Online Community HERE:You’ll find a list of resources - and if you have questions that aren’t answered in the resources, I can get help from our Medicare experts!!  Take care,Amy GoyerAARP Natl. Family & Caregiving Expert  

As I age, I have been looking for a complete guide for end of life planning which would include all information pertaining to my family having access to info like passwords, legal contacts, insurance, monthly bills,etc as they transition into handling issues I deal with daily. there are several retail products available, like nokbox but I was trying to see if AARP has any product or recommendation. Unfortunately, there is nothing on the website nor the agent I spoke with had nothing as well.Perhaps this might be something that could be explored as a benefit or product. 

One of the most difficult tasks for caregivers is to find the money to pay for care. It's often like a puzzle with many pieces coming together to finance the overall care.  If you're caregiving for someone at home (in their own home or your home), there are services and supports available through the aging network and other organizations which bring care and help to your loved ones at home or are offered in the local community. These services are called "Home- and Community-Based" services. The services are often available at no cost or at a reduced cost, or on a sliding-fee-scale (the cost is based on the recipient's ability to pay). Some services are based on income (for example if they are provided through Medicaid), but many are not income-based and are available to any older adult or person with a disability.  Home- and community-based services may include: Senior centers Adult daycares Congregate meal sites Home-delivered meal programs Personal care from a care aide, home

I know some people would look at this question and immediately think of the 'grief' connected to the passing of a loved one, but I am asking about the grief that comes with losing your independence due to medical conditions. How does one manage knowing they are losing their sense of self and what their life was vs to what it has become?

Hi everyone! I wanted to make sure you all know that AARP is now offering virtual, online caregiver support groups where you can talk, live, with your fellow caregivers! I facilitate the Monday group at 3:30 pm ET and my colleague Jane Lincoln facilitates the Thursday group at 7 pm ET.We will be adding more groups soon, so keep checking if these times don’t work for you! (I’ll provide updates here in the Online Community when we add mtg times). You can go to this link to sign up! https://www.heypeers.com/organizations/173 Sign up for up to 5 mtgs at a time and you can keep signing up for more after each meeting you attend. You can attend every week as many times as you’d like, or you can drop in now and then when you can. You’ll find lots of empathy, listening ears, humor, resources and much support in our virtual groups! Hope to see you there! Take care,Amy Goyer, AARP Natl. Family & Caregiving Expert   

Caregiving can be very draining, isolating and exhausting - even when we want to care for our loved ones.  How do you fill our tank so you can keep going? What helps you recharge your batteries? What nurtures your soul so you can continue to care for you loved ones?!  P.S. If you need ideas, our free Care for the Caregiver guide includes so practical things you can do every day! www.AARP.org/careforthecaregiver  Take care,Amy Goyer, AARP Natl. Family & Caregiving Expert

Great day, I am looking for an online Caregiver support group. I work full-time and take care of my Mom. Seeking a safe space to connect with other caregivers.

I just took your quiz "Quiz: Caring for Someone With Dementia" and it made me think. My wife passed away with Lewy Body Dementia and I was wondering if you could maybe do a piece on the different forms of dementia. Also would one "cure" work with all types? We hear of Alzheimer's all the time but very little on other forms. 

New here, I am my husband’s caretaker, he has advanced Parkinsons.  We have been married 52 years, both retired.  Most difficult is I never get to have ‘me’ time and worry what will I do if he gets bed bound.  Uses rollator in home very slowly and wheelchair away from home.

I am looking for ways to get a break from care giving. what options have you found available, and affordable? 

One of the biggest struggles families face is knowing when it’s time to seek more support. Many wait until a crisis happens before exploring senior care options, which can make decisions feel rushed and emotional. As an Adult Family Home provider, I’ve seen how much peace of mind comes from planning early and understanding the different levels of care available. ❤️

We're glad you're here. Whether you're caring for a spouse, parent, family member, friend, or planning for future caregiving needs, AARP Caregiving Connect is a place to ask questions, share experiences, exchange advice, and connect with others who understand the caregiving journey. Before You Post Please remember that this is a public discussion forum. To help protect your privacy and the privacy of those you care for, please avoid sharing personal information such as: Home addresses Phone numbers Email addresses Financial information Insurance or policy numbers Medical record numbers Other sensitive personal details  When discussing caregiving situations, consider limiting details that could identify you or your loved one. You're Not Alone Caregiving can be rewarding, challenging, emotional, and sometimes overwhelming. This community brings together caregivers from diverse backgrounds and experiences who are willing to share what they've learned and offer support along th

Mom fights me every step of the way.  currently in transition from broken hip, in rehab but insurance says she's discharged.  Made it 3 hours at home and took her back (not covered) due to home phone disconnected and she insisted there is no password on her cell phone so that gets disabled every time she tries to dial out for 16 hours now, could not leave her alone. Taking her to find a new general doctor this morning, her previous one died 2 months ago and she didn't tell us.  She was independent before the last fall but has become worse in the hospital/rehab for a month.  Continues to argue about everything and insists she "can do it herself". As an added complication, we have never really gotten along.  When taking her back to rehab it was a prolonged screaming event.  My husband and I are struggling.

My family is struggling to find short-term respite care for a loved one, and it’s been emotionally exhausting. We want care that’s safe, kind, and trustworthy, but it’s hard to know where to turn or what to look for. I’d really appreciate your suggestions or advice

Hi, I've been caring for my dad since my mom passed 3 years ago. I've come to the emotional and difficult decision that I need to put some things in place for us. Live in Chicago and looking for a lawyer to handle securing finances, medical and financial POAs, as well as advice for dealing with getting him set up in the future for applying for Medicaid.

My wife has dementia and I cannot depend on her to dial 911 or speed dial someone to come and help me. I want to learn which item to get. An apple watch? I need it to notice that I'm in distress and call for help.  

Hello, I am kind of overwhelmed.  For my mother, I am looking at medical alert devices and cannot decide on the best one (wrist watch).  I am leaning towards Bay Alarm Medical and Medical Guardian. Does anyone have any experiences with either company? Any advice is greatly appreciated. Thank you, Don

My wife of 50 years has an altered mental state due to sepsis.  She's in the hospital now but demanding to return home instead of a skilled nursing facility.  She hallucinates and is quite angry with me for not jus taking her home.  Since her hospitalization, she cannot walk or even stand up.  Of course, I'm not angry with her..I love her...but I'm devastated that she cannot return to the life we had before sepsis.  I sit here sobbing.

Hi everyone, I’m trying to find dependable adult home care for my uncle in Washington, but I’m honestly not sure where to begin. He needs some help with daily activities at home, and I want to make sure he’s getting the right support. I’ve been searching online but the options are a bit overwhelming, so I’d really appreciate any suggestions or guidance from people who have gone through this before. Thanks in advance.. -Mary