Resources for Caregivers of Elderly Family Members

[bloomie]

Books -

How to Care for Aging Parents, by Virginia Morris and Robert Butler

The Boomer Burden, Dealing with your Parents' lifetime accumulation of stuff by Julie Hall

Caring for Your Parents: The Complete Family Guide -  by Hugh Delehanty, Eleanor Ginzler, Mary Pipher

The 36-Hour Day: A Family Guide to Caring for People With Alzheimer's Disease, Other Dementias, and Memory Loss in Later Life" by Nancy L. Mace and Peter V. Rabins

Elder Rage, or Take My Father... Please!: How to Survive Caring for Aging Parents, by Jacqueline Marcell

Websites:

US Resources:

http://www.caregiving.org/resources/general-caregiving/
Many helpful links to resources if you follow the above link

AARP Care Connection: https://careconnection.aarp.org/en/home.html?utm_medium=National_SEM_Campaign2&utm_campaign=parents_caregivers&utm_source=CareConnection&gclid=EAIaIQobChMIjJ-eua7V1gIVUIJ-Ch1Y0wlTEAAYASAAEgIPiPD_BwE

www.Agingcare.com - a wealth of resources, articles, information - direct link to caregivers resources: https://www.agingcare.com/caregiving

https://www.caringvillage.com/2016/03/30/top-10-caregiving-blogs-caregivers/
(Links to Top 10 Blogs for Caregivers)

http://www.councilonaging.com
(local community programs and resources for low or no cost services to seniors)

International Resources:

http://www.carersuk.org/help-and-advice


http://carers.net.nz/services/

http://www.carerscanada.ca

Top 10 Caregiver Blogs: https://www.caringvillage.com/2016/03/30/top-10-caregiving-blogs-caregivers/

https://www.daughterhood.org
(blog with reader connection/comments, links to resources.
Articles about caring for Personality Disordered Parents:

https://www.agingcare.com/Questions/tips-for-caregiver-of-mother-with-borderline-personality-disorder-214379.htm

https://www.agingcare.com/articles/caring-for-narcissistic-parents-150302.htm

How to Cope with Mentally Ill Parent, Deb Hipp
(Includes a list of excellent resources near the bottom of the article)
https://www.forbes.com/sites/nextavenue/2017/04/30/how-to-cope-with-a-mentally-ill-parent/#171fce591489

http://www.aplaceformom.com/blog/5-6-14-memoir-on-aging-parents/
Brutally Honest Memoir on Caring For Aging Parents, by Jennifer Wegerer
(also will find some good articles/resources to the right on this same page)

End of Life and Palliative Care Resources:

US: National Hospice and Palliative Care Organization
https://www.nhpco.org/caregiving

https://www.hospicenet.org/html/caregivers.html

https://hospicefoundation.org/End-of-Life-Support-and-Resources

https://www.caregiverstress.com/end-of-life-planning/end-of-life-care-what-to-do-when-hospice-isnt-enough/
(site includes a free PDF download for resource: The Truth About Hospice: A Guide for Family Caregivers)

https://www.agingcare.com/articles/elders-abusing-their-adult-children-or-caregivers-137122.htm

[Spring Butterfly]

Experience with Geriatric Care Managers

Background: I was sole caregiver to uBPD mom and bipolar PTSD dad, both chronically ill and physically disabled, for more than 6 years. I served as both legal conservator and guardian, POA, and healthcare proxy. They are both deceased, and I am now executrix and heir. My mom lived and died (her choice) in the family home. My dad was in assisted living until he was unable to remain, with a short stint in a nursing home before his death.

tldr: I've walked in the shoes of many of you here.

And, my response to so very many of the posts here is: talk to a geriatric case manager. They saved my sanity and my marriage.

I thought if I said a little about my experiences, you might understand WHY they are so vital. And far, far cheaper than going it alone.

The company I worked with was made up of two persons. One was a social worker specializing in eldercare. The other was a getiatric nurse. Between them, they covered the spectrum, from government services to the law to clinical definitions to medical terms. I got very sound advice. The kind only insiders have. Besides, they had networks in the eldercare community where my parents lived so I had an "in" among the agencies.

These wonderful women worked for ME. I paid them to advise me as caregiver. They did not speak to my parents without my express permission. On occasion, we would conspire to manipulate my mom into doing something that needed to be done. They fought my patch. For survivors like us, who have been trapped by the evil machinations all our lives, this is invaluable.

What did they do?
*Ran interference with hospitals, physical therapists, rehab facilities, nursing staff.
*Helped me to find a good assisted living facility.
*Advised me on the clinical requirements for Medicaid application (nursing home).
*Put me in touch with an excellent elderlaw attorney, who I also cannot praise highly enough. Not a family attorney--elderlaw, Medicaid, etc is a different beast. Please, if you can at all avoid it, do NOT attempt to fill out a Medicaid application without legal help. Likewise, living trusts, updated wills, DNRs and healthcare proxies are invaluable.
*Helped me to find services for my mom and make her home safer.
*Advised me on what the law expected of me, and what it did not. Sometimes guilt or abuse can cause us to do far too much.
*Acted as third-party witness. Sometimes we would sit down with my parents and make a plan to do something. Then, like a typical PD, my mom would claim she never said that, she wasn't going to do it, cue toddler tantrum. The case managers would pull up their notes, and remind her that, she had, in fact, agreed to a), b), and c). And, like a typical PD, she'd back down from an impartial third party. This helped enormously in the gaslighting department.
*Offered perspective, praise, guidance, and a dose of reality. When I despaired over getting my mom to do even the slightest thing to help herself, the case managers told me that she was a competent adult, and there was nothing more I could do, legally or otherwise. I had to let go. You can't put a price on a clear conscience.

Now what did all this cost? Granted, I did almost all the hands-on stuff, from diapering to photocopying. BUT, I would estimate in the end that the care managers cost us roughly $1500-2000 over the course of 6 years. I was invoiced for services rendered only. I shudder to think how much more I might have spent chasing dead ends or falling into scams. Even unwittingly breaking the law.

I hope this helps. I can rhapsodize about elderlaw attorneys next, if anyone finds this useful.

Please. If you can, talk to experts. Even just one or two consults can be eye-opening. That would've run me about $150 per visit.

I welcome questions, comments.

Sealioness, I second everything you said.

My sibling and I consulted a geriatric care manager several years before we were able to get our unPD schizophrenic M involuntarily committed. Although we were not able to have her committed at that time (our enabling F was still taking care of her and would not agree to help us), the elder care manager was able to give us advice. She worked for us, not for our parents. Once F finally hit bottom and asked for help, we reached out to the elder care manager again, and with her help, we got the process in motion a lot more quickly and effectively than we would have on our own.

Our care manager was an elder care social worker in practice with other geriatric care specialists. Her help was invaluable in so many ways. She had connections to hospitals, assisted care facilities, lawyers, and so on. Plus she knew how the "game" worked and was able to guide us through it. She knew people to call for assistance at each step of the way.

For instance, our first step was to have M placed in the local hospital's locked psych unit on a 72-hour hold. The elder care manager was able to connect us with the right people to get that done very quickly. Less than ten hours after we met with the social worker, M had been admitted to the psych unit. (In the location where our parents lived at the time, this required us to get an Order of Protective Custody from the local coroner, and the police had to come to the house and pick her up.) The commitment process also required interfacing with local hospitals to find an available bed and arrange for her to be admitted. The elder care social worker helped smooth the way with all of that.

Can anyone speak to their experience regarding a geriatric care manager expecting them to do the hands-on care?

No. The geriatric care manager did not expect me or my sister to do that.

As you're discussing the situation with the care manager, she might ask whether you would be willing and capable of doing various things. Actually, I would expect this subject to come up at the beginning of your consultation. All you have to do is say, "No, I am not in a position to do that. I cannot do that."

The care manager needs to know this, because it's a fact that she will take into account when assessing the situation and advising you of the options. Notice I said "fact". Because that's all it is. "I cannot do those things" is just a neutral fact.

If my saying that to you triggers the thought, "I can't say that. The care manager will think I'm a horrible daughter", that simply means you've got some more inner work to do on guilt and obligation and the whole "adult child of a dysfunctional parent" recovery thing.

Has anyone used a geriatric care manager and still been able to stay NC/VLC?

Yes.

Or were you pressured to stay involved and be the dutiful daughter?

No. Absolutely not. If the geriatric care manager had suggested anything like this, I would have found another care manager immediately.

What happens when the elder refuses to work with the manager and throws them out of her home? Will the manager still help the adult child?

Yes. You, the adult child, are the client of the care manager. You would be paying her. It's her job to advise you.

The geriatric care manager would assess the situation and advise you of what can and cannot be done, both now and potentially in the future. She would suggest resources and options. The job of the care manager is not to make things all better, because in many cases, that is impossible.  She would not order her clients (that's you) to do things, because that's not her job. She's not your boss, and she doesn't have the power to insist you do things. A good, competent geriatric care manager understands this. An experienced geriatric care manager has seen a lot, including dysfunctional family situations.

I think that one of the most important things a geriatric care manager could do for you (I mean you personally, stasia) would be to reassure you that you cannot be held liable for "elder abuse" for your mother's decisions or for her refusal to take care of herself. It sounds like in the past you've been handed a big pile of garbage by social workers. That pile of garbage is triggering your feelings of guilt and obligation, and you're tied up in knots. Working with your therapist is one way to untie those knots. Another way will be to find out the actual facts, instead of relying on what a bunch of self-serving social workers told you in an attempt to intimidate you.

[Orangeblossom77]

I wanted to share this in case anyone else is in the same boat. It is in the UK but may be similar elsewhere.

I posted recently about elderly PD parents isolated and not seeking support but not wanting to get involved, but maybe asking Social Services for a referral / support

So today I range their local offices and instead of doing this (yet) they gave me quite a few numbers- things like local sheltered housing, RVS https://www.royalvoluntaryservice.org.uk  Red Cross http://www.redcross.org.uk

I rang them and they were really nice, i didn;t even need to mention the NC, I just said they were isolated and weren;t keen to access support, they all said they understood, and were helpful. I also mentioned I lived far away.

Some of the services offered include a home from hospital support service for 6 weeks after they have been admitted (I think a minimal charge) shopping service, befriending, lunch clubs, that sort of thing. They also gave me a hospital transport service number which would pick them up for appointments if they have a 'clinical need'.

So this is all looking good. In particular I spoke to the lady from the service at my mum's local hospital and she said if I rang them if she was admitted they would check out the situation and would be no need to say who had called, as they go round looking for people who are being discharged, anyway to see if they need support.

So, anyway this had helped me feel a bit better in terms of knowing what might happen in a crisis and less like i might need to intervene, and know who to call.