Caregiving

 Hello everyone, I just want to share two quotes that have helped to sustain me and keep during my times of lost: especially since June and October 2022.  I forgot the author's name, but I have to remind myself sometimes that: "There is a sacredness in my tears. They are not tears of weakness but of power; for the speak more eloquently than ten thousand of tongues.  The speak of varying measures of grief, perhaps, of contrition, and of unspeakable love."  " Grief is a passage, not a place to stay. We will not be the same nor should we expect to be. We will heal, and are healing, and we will rebuild ourselves around our losses (we have suffered). We will be whole again, but we will never be the same." The second quote is from a book by Elizabeth Kubbler Ross.  Always remember to take care of you.

My husband passed away--and it seemed sudden but had a disease for which there was no cure. Even though I try to keep busy I often get very tearful. It's been very painful. I'm sure it's been that way for everyone. And I don't know what to expect from writing this except it feels better to share.

Hello, I read of fraudulent cases on dead persons without family or close friends to see that things were done honestly.  So I wonder if anyone here happens to have an estate lawyer that you trust so you can recommend her/him to me?  I'm what they call now an "Elder Orphan" who has no family of any type or close friends as I had when younger.  Hope to hear from someone with a good recommendation?   Thanks so much in advance!  🙂   P.S.  I wish AARP's website were less difficult to navigate to find the different topics and other pages... This will probably be my last time on this site.   😞

The Parkinson's Foundation presents a free program featuring an introduction and basic overview of Parkinson’s disease (PD). PD varies from person to person and changes over time. Discover its causes, common symptoms and available treatments. Learn practical daily living tips to empower you to take charge of your health and to navigate the challenges of living with PD. To register for FREE, click here. Date: Wednesday, August 7, 2024Time: 1:00pm-2:00pm ET Speaker:Christopher Tolleson, MD, MPHClinical Associate Professor of MedicineDivision of Neurology Director of University of Tennessee Medical Center's Cole Center for Parkinson's and Movement DisordersDirector of University of Tennessee Medical Center's Huntington's Center of Excellence

I am looking for a group I can go to to MAKE complaints ABOUT caregivers. Does anyone know of a facebook group that is specifically devoted to this topic?

Hi everyone. I know that I haven't posted in a long time and I am really sorry. Everyday is a challenge for me to keep going. Life just keeps kicking me. I am still dealing with things about my husband and it's not giving me the time that I need to grieve. Social Security still has not processed my son's claim for him to start collecting under his Dad and this has been ongoing since February 2023. My Mom has been diagnosed with dementia and it's progressing faster than I hoped. My brother packed up and moved to Florida without telling any of us. Here's a positive note. My daughter gets married in a little over 3 months. She has her wedding gown and is stunning. Beasley turned a year old on Father's Day.  

@SummerOnTheWay1 .Hi everyone. Just checking in. Vacation is going to fast,  but otherwise I am having a great time. Lots of sun, fun and not thinking about the problems of life. They will still be there, but for now they are on the back burner. I did get some good news. It seems they finally are getting my son's benefits changed and they have started my disability appeal. Beasley is at the kennel for the first time and I checked in with them and he is being a lovable goofball. I will talk to you when I get home. Love you all and especially my sister by another mother Nicole.🏖

Parkinson's Foundation Wellness Wednesday: Exploring Next Steps in CareCare needs in Parkinson’s change as symptoms progress. Join the Parkinson's Foundation next Wednesday, July 17 to learn what you need to know to find the right kind of caregiver to meet your needs and discuss next steps to consider for care as Parkinson’s advances. This program will provide you with tools to help you decide when it’s time to ask for outside help.   To register for FREE, click here. Date: Wednesday, July 17, 2024Time: 1:00pm-2:00pm ET Speaker:Joan Miravite, DNP, RN, FNP-BC, FAAN, FAANPAssistant Professor, Icahn School of Medicine at Mount SinaiDirector of Interdisciplinary Clinical Care for Movement DisordersMount Sinai Beth Israel, Department of NeurologyStrauss Movement Disorder CenterParkinson Foundation Center of Excellence

@SummerOnTheWay1 .Hi Nicole. Hugs and kisses. We leave for Ocean City Saturday morning. It will feel better to get away from here. My problems will be with me,  but at least I don't have to worry about that when I am gone. They will be here when we get home. It's time for sun, beach (not much for me though, because I'm SOL if I get knocked down, LOL), pool and walking the boards every night. The best part is being with family and watching the joy on my son's face. All my love.

Hi I have my mom living with me since May, 2021; her fourth time living with me over the years. She was a California resident living in her own house, I had increased concerns of her decline. Mama is 90, I am 61 and work remote in telehealth (gratefully). Mom has stage 6e Alzheimer Dementia. I am now her legal guardian (after needless legal issues and a family from hell). I provide 24/7/365 care on all levels. We have had recent PT, OT, and ST. I am just now venturing out to look into day programs for her social needs and maybe someone to help with light grooming (brushing teeth, bathing). She does go to the store with me, we go walk at the park at least three days/week, light picnics, and sit down restaurant (though that may be ending). I do her mani/pedi, help her soak her feet and keep the skin nice.  Though I do online ordering for groceries and supplies I still need to go get oil changes, go to my annual medical appointments, take a walk by myself, etc. I guess

FROM ARTICLE - SEE ARTICLE FOR MORE!!! "Her living will takes over now,” the nurse practitioner said the morning after my mother slipped into a coma. I was 51 weeks into 24-hours-a-day caregiving, which included constant decision-making about hospital, rehab and nursing facility admissions, as well as readjustments of medication and treatment plans — without a break. Practically every day of caregiving held life-or-death choices. https://www.aarp.org/caregiving/financial-legal/info-2019/what-is-a-living-will.html

Also on a positive note. Vacation starts July 13th. Heading down to the OC Maryland. I can't wait to relax and not worry. The problems will be here when I get back but I'm not going to think about them. I just want to have a good time,  great weather and enjoy my son's happiness. Love you all.

I don't see anything here or elsewhere about grandparents who care full-time (M-F work hours) for special needs grandchildren. When my 9-year-old autistic grandson was told by his public school that they could no longer meet his needs in school due to behaviors that were not safe for him or others, I became a full-time caregiver. His parents can't afford not to work, or afford to pay me for his care. I live 20 min away, so there are also transportation costs involved for all of us. They are in the process of getting some limited disability services through the state, but none cover more than occasional respite care and help with his expensive medications. To make this work financially, I have taken early Social Security at 63 to be home full-time with him. Fortunately, my husband is still working even though he is 65 and has health issues, so we worry about how long he can continue. Finding anyone able or willing to care for him is very challenging. He needs someone one-on-one in

Good morning everyone. I am so sorry that I haven't posted in a while but,  I am still here and trying to survive.  I saw my therapist last week and I have asked for an emergency appointment which I have today. I realized over the weekend that I am in a crisis mode.  I am sad, angry, depressed and anxious all at the same time. I think it's more anger than anything else.  I am still very angry at my husband but I just hit the one year mark. I am also angry with my brother because he has chosen his 4TH WIFE over his family and instead of being rational he said somethings to hurt me to my soul. He will always be my brother and I will always love him but for now,  we do not have anything to do with each other.  The only good thing about it was that I finally got to tell his wife off which had been building up for years. He doesn't respect our mother and, I feel sorry for him because we lost our Dad 34 years ago and as we all know in this group, tomorrow is not

I wanted to share several AHA moments that I had in the last few weeks.  I was surprised that after 2+ years since my husband’s passing, I am feeling more positive and hopeful for the future.  This was gradual. I know that my husband will always be part of my life, but somewhere along the way I lost the anger, guilt, and bitterness.  These were strong emotions.  Regret is still part of my life and primarily wishing he was here to be with me to enjoy some of the better moments.  Being here through the tough moments would also be a relief!  Having said that, one of my griefs share buddies said that he saw a big improvement in my attitude!  I was surprised.  Upon reflection, he was right.  I lost the anger primarily due to actively working to forgive.  Not easy, I just took it one step at a time to avoid self-pity.  I guess the key is to stay alert and try to honestly deal with your challenges. As an example, I recently met a widow at

As I thought about Mother’s Day, I wanted to thank all of those individuals who over the years provided caring and loving support to me at critical times. I think this feeling goes beyond the traditional “Mom” thinking and should extend to others who have made a difference in our lives.  Teachers, mentors, aunts, sisters, neighbors, etc come to mind. So please if you can take some time to reach out to those “Moms” who are with us today. This loving gesture is just what they and you need.  Happy Mother’s Day to all.  Your friend, Sue

I'm 59 and live alone after caring for my wife in her dementia for 11 or so years. I have no in person friends, the rest being a few people online I'm friendly with but not close with. Although my mother lives in town, she is not the kind to provide the support I need. Neither is my brother, who lives across the state. Having several mental and physical health issues that are concerning, and living in the depth of emotional distress I experience, I want to build a safety net in case something happens to me and I either die or become incapacitated in my home. As it is, I could lie dead or unable to summon help for many days before anyone noticed I hadn't texted in a while. It's a depressing thought. I also have animal companions that would need to be provided for if that happened! I need a plan and some kind of help implementing the plan. I need to know that someone will notice if I haven't checked in and that something will happen because they noticed. That, and creating

Two cautions re passings.We had a friend who experienced the passing of three close relatives in one year.  The stress from the grief was so severe, that he became extremely ill, had to go to the hospital and almost lost his eyesight (from some kind of profound infection from the illness he had).If you experience profound loss, please consider taking a bit of counseling for awhile.The second caution is a bit unusual.  I saw a friend a few days after my father passed.  He said to me, "Be careful driving."  I said, "What? What did you say?"  He said, "Be careful driving."  I thought he was nuts.Later that day, sure enough, I ran a red light and almost killed myself.Apparently, grief has some kind of side effect that it powerful absorbs your thinking...and, I guess your concentration level can slip.  I would not have believed this until I experienced it myself.Sorry for everyone's losses.Take care.

A recent article in the Wall Street Journal  of 4/29/24, entitled "An Au Pair Could Take Care of Grandma" authored by Kristin Shapiro and Kelsy Bolar ,suggests that our administration should encourage supporting the use of Au Pairs to help caregivers across the country. Today there are financial support systems in place to encourage the hosting of international au pairs to help families with child care needs. The costs (payments to the au pair ) are significantly less than other options for parents and the au pair receives an experience in American culture and support. Today over 20,000 au pairs enter the U.S. annually, to work with host families, but "current administration is proposing regulations that could double the cost of hosting an au pair". The authors suggest that our administration should not only drop the proposed regulations, but also extend them so that needy families could host these foreign national, young adults and in turn, receive help in providing car

This is what I suffer from....on top of being dx with PTSD. The losses are not the cause of the PTSD....It started with losing my middle daughter at 21 in a horrific car accident...took me 25 years to fully grieve her loss...Between losing my daughter and my second husband on her birthday 13 years later at 54 to lung cancer....I lost my only sister to suicide....and 3 of my closest friends of life....when my husband passed so young I found myself really alone....I tried everything, nothing worked for long....My first husband and I always remained friends since we dated 4 years before we married and had a very tight bond, and my second husband and him liked each other...so when my second husband passed, my first became closer and closer as we used to be...just the friendship , not the relationship...He was a Viet Nam vet who had PTSD when he went in the service and of course Nam made it worse..by 40 his drinking escalated...at one point I couldn't live his life and he couldn't live mine

Parkinson's Foundation Expert Briefing: Sleep Challenges with Parkinson's DiseaseA good night’s sleep is critical to our health and well-being. For people with Parkinson’s, sleep is more important as the brain and body need more time to restore. Join the Parkinson's Foundation next Wednesday, May 8th to learn about the common sleep issues associated with Parkinson's disease, how it affects sleep quality, and explore ways to get a better night's sleep while living with PD. To register for FREE, click here. Date: Wednesday, May 8, 2024Time: 1:00pm-2:00pm ET Speaker:Aleks Videnovic, MD, MScDirector, Division of Sleep Medicine, Massachusetts General HospitalProfessor of Neurology, Harvard Medical School

@SummerOnTheWay1 . Nicole, I just had the greatest 3 hours. My male BFF came into town and I had not seen him since 2016. We spent the last 3 hours together and it was like time rewound itself back 40 years.  That is the best thing that has happened for a long time. It also made me so HAPPY, LOVED and the most awesome time.  I am so glad to say that for the first time, I actually cried from joy and not grief or sorrow.  BEST DAY EVER.

I am enjoying Spring more than I remember.  I am more aware of the small yet sweet signs of Spring reawakening.  Trees sending out blossoms, bulbs shooting up, birds singing their songs, weather becoming warmer.  All signs of life’s rejuvenation.  It will not be the same Spring as prior years, nor should it be.  A new season also called Spring.  I am finding it inspiring that Nature continues despite losses and hardships.  There seems to be an innate spirit to create and prorogate as is necessary to continue life.  I started thinking that is where I am now as well.  I am recreating and rejuvenating.  Like past “Springs” but different.  Not surprising but necessary as I adjust to the new “Season of my Life.”  I am getting out and enjoying these wonders.  Life is responding with resilience and determination, despite setbacks of cold weather, pests, predators, etc.  Like us.  I am striving for that natural harmony

  With Coronavirus hitting and visitation bans being common, the possibility of putting remote cameras in loved ones rooms has renewed interest. This would give families to check up on their loved ones.    How would you feel about legislation that would allow for this to happen? 

Here he is in his favorite position and all his glory.