Caregiver Conference -------------------- https://idahocaregiveralliance.com/caregiverconference/ Thank you for the heads up on the caregiver conference….I always seem to find out about that one AFTER it happens! :-) Tell us about you ----------------- Mom Mom and caregiver of adult son Mom and provider Dad & caregiver of adult daughter Care Giver to daughter Mom and care giver for adult daughter. Caregiver for mother and sister CFH provider, caregiver, developmental specialist, targeted service coordinator Ron and Lynne family care giver for son. Wife, mom, grandmother, caregiver of adult daughter Caregiver to adult daughter and elderly mother caregiver for daughter Supporter of caregiver for patients in Idaho Mom of adult disabled son, Caregiver wife, Certified Family Home Brother in law care giver I usually say “caregiver” : But I think that Certified Family Home Provider: 3 adult kids with Autism Certified family home, mom, guardian to son and grandson Family Caregiver Caregiver to many Adult son caregiver mother n law Mom, CFH for Adult Son caregiver of my two children Medically challenged son with Downs Mom and caregiver to my special needs son. Family daemons -------------- Victim Fairess Selfishness control Lack of support Doesn't understand Expectations blame Support and apathy Feeling sorry for herself Jealousy stubborness Frustration Guilt I already love the way that you frame the concepts…like “building bridges instead of walls” and “choose a team”…. I’m hoping that there is an outline afterwards…. Barriers -------- The biggest barriers are unfortunately the Dept. of H&W and Liberty. Unfortunately, that’s so true in my experience, too. H&W can cause more problems for the caregivers. Yes, gotta love those who interfere in a negative and unsupportive way. The clients always will listen to that. It's very frustrating when someone outside of the caregiving is giving advice to the clients With disabilities there is not always client understanding Can the doctor put this diabetic on a specific diet? that would have to be followed in a CFH. Planning -------- All the Estate and direction are all taken care of. Thank the Lord. For parents who most likely will pass away before their adult child, a trust fund, will and ABLE account are helpful. Yes, learned experience got me to get all our planning in tact We haven't had any problems When My Mother passed, there wasn’t a burial plan, location, how to cover expenses, etc Before crisis! not during Put a burial plan in place for mom and she is currently paying for it before her passing Prior to full time caregiving for parents. definitely prior planning. When we transitioned from school services to adult care The Health Care POA was a lifesaver last year. Mom is living in a Memory care home. She was taken to the hospital, They promptly decided they were going to move her to a nursing home, instead of where she lived. I told the doctor, she was NOT going to mov we all have an advanced directive Nursing care ------------ Providing care with too many providers. Coordinate I'm not a nurse and I take care of my son who has Type 1 Diabetes There is a difference between CFH and family member. Family members can give medications. Surprises --------- The big one: What's next when we can no loger care for our daughter. It's hard to keep up with because my last client I had to do wound care and give meds. Everyone said it wasn't on them. I trusted the professionals too much and should have done more research I say making sure the doctor is a great comunicator. When medications were prescribed - and when medications were stopped… Not vaccinating their child. I'm close with my Mom, so that helps Not yet. No surprises yet Final arrangements. Burial vs cremation. When I covered advanced directive with my kids, they pretty much said “You decide!” So, it was a little surprising…. LOL :-) Are you talking about your life or theirs? It was regarding their lives . :-) That’s different isn’t it? Great points! Thank you :-) Value questions --------------- Is there a list of value questions to ask? And what is go wish? Thank you! A targeted service coordinator I would start with the service coordinator internet or ask TSC Service coordinator Target Service Coordinator I often ask my TSC. …and then we often brainstorm. Other carers who work with our daughter When engaging professionals, always write down questions that you need answers to because you always forget an important question or concern. BSU’s is called Family Caregiver Navigator, and you can google that. Where are your documents? ------------------------- I have a copy of my mom's Advanced Directive in a sheet protector on the wall outside of her bedroom, a copy of her life insurance and burial plan in the file cabinet, and have shown my husband, my children and the one sister that lives in the area where yeah these documents are somewhere in the house. somewhere. Trust me, it took me a while to get all of it together?? labeled file folder in filing cabinet Not very well. Our legal stuff is all in one big folder but everything else is spread out all over All family members have a notebook. And our CFH folder I guess for our daughter Primarily in paper form in a file cabinet. Along with web links in a password manager. I have a portable file, but am working on getting more documents together…..and more processes in place. All of the information is in our safe. I keep a binder for each person I care for (Parents, children,siblings) in my file cabinet. digital and hard copies in a filing cabinet tax time is a great time to list your key accounts and professional contacts- as you review your taxs. I'm a professional organizer. I'm always happy to help anyone to organize anything. My email is pamelawardle@gmail.com and number is 208-615-1631. I won't charge you. So please call me. I'll help. Tug of War ---------- thank you, I have 5 siblings and we aren't always on the same page, I tend to always put it all on me, lol. same ?? that is a great idea to have them watch! none of us want to fight with our sister hahahahaha Letting mom do what she wants vs forcing her to do what my sibling believes she needs to do The question of if Mother should live in a care home versus with a family member that wanted to care for her. The siblings had divided opinions. Backup plan/respite ------------------- My mother has dementia, took care of her for 10 years. I had to force myself to allow someone else that is trained in this area, to care for her now. I was physically getting sick. I had a heart attack at the beginning of the year and there is no backup plan for my mother or sister With adult disabled children caregivers passing is THE thing you HVAE to plan for. Just starting on that journey and it is really hard Ashley Manor in Mountain Home is amazing! That's my biggest worry. I don't have a back up plan for my Mom or my sons that I take care of. Who to trust and so on is hard Ashley Manor in MH has 2 assisted living homes and a locked memory care home. I am the back up plan for my residents' families, and I feel so guilty when I start thinking about my retirement and future. Exactly. My residents have lived with me for over 17 years now Female caregiver having a stroke / other caregiver is male, needed a caregiver to provide personal care help to two female residents End of life What happens when we can no longer be carers Where she will live when we are gone or no longer able to care for her Especially with intellectual disabilities Taboos ------ We recently had to discuss sex and him being able to have babies with our resident on the spectrum he is 38, that was interesting and very hard. That's always the fun talk lol Hoarding too much personal belongings! Won't get rid of stuff. How do I explain to my husband when I feel I need to be done caring for his adult daughter. I believe that day will come. This is his daughter, she became mine 32 years ago. Ive been caring for her that whole time. I think that my my own passing as the caregiver, or when I may need caregiving of my own…and the future living arrangements for my dependents are the harder topics Outlets ------- Getting my nails done is my outlet My guys said if i leave town, they will find me lol counseling Therapeutic massages Getting away for more than a few hours is really tough to arrange. Walk on treadmill for five miles every day. It’s hard but I do need to make more time for myself Massages, walking 2 miles a day alone with my husband. I have 3 girlfriends I can call anytime and just talk. Going to a Women's Bible Study group. 2 vacations a year, fishing this weekend for me, then my husband and I go on a big vacation together once a year, and he goes hunting so we both have a week away alone, and then 2 weeks together, we are blessed to have substitute caregivers that are trust To be honest, that is my current goal….Making the effort to take care of myself…. It little and big ways… A friend recently used the familiar oxygen mask analogy on me! Feedback -------- This has been one of the best classes I've taken part in. Thank you so much!!! Thank you! Great information. All of them!!! ALL tug of war...…….. communication! Such an excellent presentation!!!! Thank you so much. All of them were super helpful. Spoiltfor choice. Upfront planning and conversations. Great Class! Thank you! yes, great presentation today!! Thank you, thank you all thank you so much Dee and Darra!!! Great information; thank you Awesome information! Thanks Thank you! Amazing session! Support goes out to all caregivers in Idaho. THANK YOU!!! go to the gym Thank you! Great information! Thank you ladies! It was awesome! Thank you for that Kim! Love that. As always wonderful class. Thank you! https://www.ihcca.org/home/smart-workshops/ Information will be posted soon.... Thank you!!!! Oh CFH Pandora's box is opening eeek. Thank you Kim! You do a wonderful job! Thank you e my mom anywhere. I held the Health care POA. And it worked. all of this information is. worthy and knowledgeable.