Caregiving For a Loved One With Late-Stage Dementia | LiveTalk | Being Patient

Being Patient speaks with palliative care physician Dr. Lynn Hallarman about her own family’s journey caring for her late mother with dementia. Hallarman shares guidance and insight on navigating the challenges of caregiving in dementia’s advanced stages.
For more about Hallarman's experience: jamanetwork.com/journals/jama...
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[@shellyjoe6657]

My mother passed away last week from Dementia at the age of 88, days short from her 89th birthday, I have been taking care of her for the last 7 years in my home. In my experience the demise is gradual in the beginning and accelerates the last few months. I can't recommend at home hospice care (paid for in most cases by medicare if they meet the guidelines) enough. The resources, knowledge and support from the staff has been invaluable to me. However, at the end mom started falling a lot (last month or so). My son would pick her up and luckily her injuries were mild. This is the hardest part. One afternoon I had a freak accident and needed to be hospitalized for a day and hospice put mom in what they call 'respite care' which is common to give the caretaker a break in these instances. It's usually a 4 night stay in a nursing home and medicare again will cover the 'room and board for that time frame' Unfortunately a bed in a nursing home was not available but they did find one in a hospice center ( I had to pay out of pocket because medicare won't cover this, but they did work with me on a price per night). Again the 'At home' hospice team arranged all this, so I could be treated for my injuries and rest at home for a few days. Well, on day 2 of my bed rest I called the center to see how mom was doing and if she was asking for me. They told me she was non verbal. This was a huge red flag to me, as 2 days previous she was talking, mostly gibberish but talking and saying random names. The next day I had my son take me down in a wheelchair to see her and she had declined immensely she was not eating, not sitting up not moving, she had a catheter and I was told he body was shutting down. From what they told me, sometimes they hang on for others and when she got to the center she may have felt relaxed enough to let go. My other son came down for another state and we sat with her for the next 2 days and she had that death rattle and finally took her last breath on the 13th of August. She was resting comfortably with her family around her, the hospice team did all the work providing comfort care so i could just be with her until she went home to be the Lord. So I guess my advice is. God knew I wouldn't be able to handle those last few days so he allowed my fall to happen to put mom where she needed to be with 24 hour care in the last days of her life. Take advantage of all the help you can get. Including meals on wheels and other resources for seniors that your local elderly senior care centers can recommend.

[@corvidaesapiens]

Just wanted to say that I appreciate this channel and your work a lot. I'm not a dementia patient, neither do I have relatives or genetic predispositions, I'm just an inquisitive teen who loves to learn about brain diseases, especially Alzheimer's disease. You provide content that helps me get through the day and calms my anxiety about neurogenerative diseases. :))

[@nekodragon1249]

My. Late dad died many years ago but he had dementia and als so I can see the difficulty you experienced my prayers are with your family

[@dianaa4149]

I’ve watched many videos on dementia, and this is the most helpful of all. My mom is in the very late stages of vascular dementia, and this tracks so well with her journey, right down to the pictures. As we face these last weeks and months, this information is helpful in making decisions for care, as well as what to expect.

[@karlalvsmissy9437]

My mom perseverated a lot. Your mom sounded a lot like my mom. She was pleasant, happy, charming, laughing, never really angry. I miss her and I cherish those times we took her out and around too. She passed 1/8/22. It’s almost just like what happened to my mom. She couldn’t swallow. She liked more sweet foods and developed a GI bleed from an infection. My brother wanted all my moms money. He coerced her to change her will. It’s a really upsetting time for my sisters and myself, mourning and fighting to contest moms will the way she wanted it. Thank you for this video. The best info.

[@marcoschena99]

Great chat

[@karensummey7336]

Thanks so much for this video. My 92-year-old father has Alzheimer's, and my 88-year-old mother is slipping as well. They both have some of the symptoms you mentioned. It was helpful to know what's ahead.

[@cassandrahawes8970]

I copied durable power of attorney for health and finances forms for my state offline, took them to my bank with my mother in law and got it all notarized. I just want people to know that it doesn't cost thousands or require ann expensive lawyer, or courts.

[@k.r.1069]

ALL COMMENTS/VIDEOS are regarding caring for ONE parent with dementia. I'm the ONLY CAREGIVER (& I AM 100% DISABLED!) who has cared for TWO PARENTS WHO BOTH HAVE DIFFERENT DEMENTIAS for 6+ YEARS! I have NO children, NO siblings, NOTHING, it has just been ME! My parents are in Stage 7 now, but have DIFFERENT symptoms, DIFFERENT health issues, DIFFERENT Sundowners probs, & on & on & on. The 1st 2-3 yrs (again me 100% disabled! And all they have had! Tho' there were others who did NOTHING!), I worked 90+ hours a wk, eating maybe 2 REAL meals/week, driving n2 my driveway & falling asleep immediately til my husband came out to get me, being so exhausted I'd fall asleep in the morning @ the drop of a pin, spilling my coffee all over my lap! There were nights I BARELY made it home-I was SO exhausted! AGAIN, I'M 100% DISABLED! There was a 6 month period I almost, or did, get n2 car wrecks from sheer exhaustion! No one in my husband's LARGE family undestood, nor TRIED to understand(!), nor helped in ANY way! Tho' I (we) have helped ALL of them in EVERY WAY, 10 adult grandkids, 3 50+ "adult children", & great-grandkids. Gave cars, pd 4 private schools, bought furniture for, sent $ to each month while they bought new cars & we (living without ANY, debt, driving used but nice cars pd w/cash, paying our mortgage off early, & ALWAYS, EVERY MONTH GIVING TO TRULY NEEDY PEOPLE!). We did without wants, buying ONLY needs, while all drove new, fanc.y cars, or had Nike shoe collections, yet they all had zero savings, til we finally woke up & said "NO MORE!"). But NO ONE EVER SPEAKS ABOUT A SOLE CHILD, USUALLY A DAUGHTER, CARING FOR TWO ELDERLY PARENTS WHO BOTH HAVE DIFFERENT DEMENTIAS! I've listened to & read all books, looked online, & found NOTHING! NO HELP FOR US CAREGIVERS OF 2!! I am in the last stage, Stage 7 w/my parents, BOTH parents-who both have VERY different problems, symptoms, issues, Sundowners, & on & on! I am 100% disabled & have lost ALL my health, joy, ability to do ANYTHING that brought me joy, since this hit me (like planting flowers, playing the piano, helping with our personal business, cleaning our home & we haven't had a vacation in 12 yrs - as b4 my parents we cared for another elderly family member who was a piece if cake & peacefully died @ home taking a nap, she had ALL her cognition til the end! But I have been utterly ALONE caring for my parents! Both w/different dementias! Today was HORRIFIC! But there is ZERO HELP FOR THOSE OF US DOING THIS! IT WAS 1 OF 10, NOW PROBABLY MORE! YET NO1 OFFERS HELP TO US?! I'm close to suicide as this is BEYOND the WORST of caring for just one! YET NO BOOKS, NO VIDEOS, NO HELP! Why! WHY!? I have chronic pain, Fybromyalgia, C-PTSD, Severe DEPRESSION, ADD, & MORE! Yet STILL, ALWAYS, ALONE, I've done EVERYTHING FOR MY PARENTS! And let my health go! I feel like I've been living in HELL for 6 years STRAIGHT & no one helps or cares! I know the stress causes my chance of dementia to go up (multiply THAT by 2!!), & I swear that I WILL NOT go down the road I've watched BOTH OF MY PARENTS go down!! Why, why, does no1 help those of use caring for 2 w/dementia? Do you not care, or see the DEVASTATION it does to ENTIRE FAMILIES, but ESP NEEDED!🥺😥

[@liddobear1125]

Sending lots of love 💕and prayers youre a soldier

[@genevievepawlak7203]

Your mother wasa very beautiful women!