Hello! I apologize if this is listed under the wrong topic! Last night my family got my grandmother into a memory care unit at an assisted living facility. Over the course of the last several years, as I've talked to people at work, I've seen that so many of my coworkers are struggling with all of the issues surrounding elder care and dementia care and trying to make sense of everything while balancing the demands of their own family obligations, work, health issues, etc. The information is there, but it's hard to find at times, extremely complex and we're often in a state of emotional upheaval when we're trying to navigate the system. So as the leader of our corporate wellness team, I'm going to create a series of after-work, one hour workshops to address things like the differences between the types of care, understanding Medicare/Medicaid, in home care and it's benefits/shortcomings, POA, navigating family disagreements, etc. I want to end the series with a workshop built around the idea "how can I make things easier for my kids as I age."
I'm really interested to know what each of you sees as being essential topics to include in the series. What do you wish you would have known when you started on this journey? What nugget of information helped the most? This forum has been a huge and invaluable source of knowledge and a place from which I drew much strength in developing my advocacy skills. I want to arm my coworkers with the tools to make the tough decisions they'll face. Your help is irreplaceable.
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1. You can say "no" to hospital discharge. It can be because it will be an "unsafe discharge" because there will be no one at home to care for the patient, or because they haven't addressed the problem that the patient came in for.
2. UTIs can cause psychiatric symptoms in elderly people.
3. A good geriatric psychiatrist may be the most important person to get on your parents' care team. They see the who patient, body, soul and mind. Your parent should have to suffer with anxiety, depression or panic. Psychic pain is PAIN and should be treated. Even if it means a Black Box drug.
4. Don't give up your livelihood or your marriage to become caregiver to your parent. Your parents' funds are their to fund their own care. Your retirement funds will be needed to fund yours. Everyone pays their own way.
5. If you HAVE to move a parent in with you, make sure that YOU have POA and access to their funds to pay for care. Not your sibling or step-parent. Set up a caregiving contract and room and board agreement with your parent BEFORE they move in.
1. Boundaries, and why they are so important. Parents can make it difficult, and the caregiver must stand firm and enforce their boundaries, or they will be sucked in and under.
2. Dealing with hospital personnel who want to dump the care of the elder onto family members, when the person/family can no longer care for the elder. Make seminar attendees aware of the lies and promises that might be made by the hospital personnel ("There isn't anywhere available right now, but if you take him home I'll let you know as soon as I find something!"). The best time to have facility placement take place is often when the elder is hospitalized. If the hospital wants to release the elder who needs a lot of care, and the family can't/won't take responsibility, the key words to use by the family are, "This would be an unsafe discharge." That forces the hospital's hand, and they have to come up with another plan.
One more comment -- make a phone list of hospitals and EMT services in your LO area ahead of time, just in case you are blindsided by a call.
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Have THE TALK early. Don’t wait till the neighbors are calling telling you about mom wandering the streets in her bathrobe. Sit down with you parents/loved ones and ask about end of life wishes, POA, Wills, bank accounts and so forth. Lay some track early.
Elders are not always cooperative. Well, hardly ever really. With my folks I had to do lots of covert operations to find important paperwork and financial info. And what I found was a big mess.
Dont wait for the official diagnosis of dementia to act. You see lots of posts here where elders supposedly don’t have dementia but are making horrible decisions. To avoid financial, driving, and medical disasters do as much as you can to mitigate.
DAD WILL GET SO MAD IF WE TAKE THE CAR/TAKEOVER HIS MONEY/GET IN HOME HELP etc, etc. You cannot allow poor decisions and/or dementia to run the show. Elders are going to have to make changes they don’t like. And it can be a battle. I learned to choose my battles. Didn’t win them all by a long shot.
I CANT LIE TO DAD......Yes you can. Fibbing is the only way to keep elders calm and help them as dementia develops. My folks would have died horrible deaths in a filthy house had I not done my daily theater.
Take advantage of the crisis. There will be a fall, stroke , car wreck, or any number of things that force a change. The change might be such things as ending the driving, getting in home help or moving to a care facility of some sort. My mom fell for the umpteenth time, went to the hospital and from there to assisted living. Huge fight, crying all that, but I held fast. No way that women was going back to that run down house. She was a two person assit at this point.
Realise that you can’t fix old age. We’re programmed from birth to do the best we possibly can for our kids and parents but you can’t fix everything. I read so many stories of folks chasing around for the right doc, right therapy, best drug, for their elders. I understand, I did some of that also. But at some point it really doesn’t matter that a 90 year with advanced dementia, COPD and heart failure eats a little too much ice cream or quits taking some drug or other.
Wellness for caregivers is vital. Research indicates that up to 40% of caregivers die before the person they care for. That is a sobering figure.
Boundaries for caregivers is another good topic.
You will find ideas if you scroll through this site. Good luck
1. Someone from a Veterans Assistance Commission office to come in and explain some of the programs that are available to Veterans and the family.
2. An Elder Care Attorney to explain some of the processes that might be necessary. From Guardianship to Avoiding Guardianship, Trusts, Wills and all the rest of the stuff that no one wants to talk about.
3. Someone from Hospice. They can explain how much help that Hospice can provide, that it is not a "6 months or less" and that they will not "overdose and kill" your loved one.
4. Someone from the Alzheimer's Association that can hep explain dementia. They have a WONDERFUL program that takes a few weeks but it is so full of information. And include other groups. Parkinson's has a particular dementia, each dementia has it's quirks that people should know about.
5. Ask other employees to share their experiences, what they have learned navigating the quagmire that is care-giving. There will always be someone where you were 6 months ago and someone where you will be in 6 months. When I first started going to support groups I felt that it was a good day if someone was having a more difficult time than I was...and if I could help someone with what I had learned that was worth the education. We all learn from each other
1) . There is no new learning that you can expect from this person any longer. I tried to "train" my mother to save up her mail so that we could go through it together every few days. Big surprise/ It didn't work.
2) . Figure out finances and obtain POA and Durable Medical POA if you are even thinking of taking over your loved one's life and affairs. It's incredibly difficult and stressful even WITH these documents in place; do not attempt managing your loved one's affairs without both of these items in place.
3) . Reality. Grip it. You will need to keep telling yourself that this formerly capable person is no longer capable of making sound decisions for major life choices; you will need to step in and step UP to make decisions for them and be their advocate. Even though they may disagree or not agree, with any or all of your decisions. As an RN, my primary duty to my patients in the operating room was to be their advocate since they could not protect or defend themselves. You will need to act on this truth, for their benefit; again, even when the loved one does not agree and cannot fully or even partially understand why you are making certain plans/events take place. Examples include hiring help inside the home, or placing your loved one in a memory care facility, or taking away the car keys.
4) Know who your support system is (and who is not helpful or supportive), and try your best to not take out your grief, anger, sorrow/angst on any one person for too long. You may lose friends/support/loved ones if you " take it out" on any one person for too long. I speak from multiple personal experiences on this one. Attend support groups formal therapy, and/or online support groups as often as you can in order to keep your existing support system in place, and you will hopefully add to your trusted core of true friends/family.
5) Don't ever forget to give yourself a break; a break from guilt , anger, discouragement, and disappointment. You will make mistakes along the way and second-guess yourself. We are only human and this is going to be one of the most difficult journeys on which you have ever taken; you didn't even ask for it, but it's happening! It might be long, it might be short, but it will be difficult; make sure to pace yourself along the way.
There are other great resources at your local Aging and Disability Resource Centers (ADRC), also available through your AAA. (Housing, repairs, legal, heat/electricity, respite, case management, homemaker companion, transportation)
As for other topics to touch base on:
*behaviors (not showering) (repetition) (agitation) etc...
*Dementia education: effects all of the senses. (Can see but the connection to the brain from the eyes is damaged)(peripheral vision is lost) (Can hear but can’t understand)
Dementia is a set of symptoms caused by 80+ diseases. Diagnosis is key to treatment.
i have seen that many children do not want to talk with their parents about aging issues. I have many seniors that want to discuss end of life issues and the kids will not hear of it.
Another issue is gun safety.
Just a couple of ideas to help.
Cuddos to you for offering this help to people. It is more than needed.
comes in.