Caregivers, I am a young(er) caregiver, balancing supporting an ailing parent (early-onset dementia, history of stroke) and kids of my own. I am working on a resource for myself and other millennial caregivers and interested in any tips experienced caregivers have.
DON’T TRY TO GO IT ALONE!
Find what organizations are in their area to help and, when they need the help, try to craft together essentially a team that works well together. (I lucked into this.) For example, I have made sure that my mother’s caregivers know her doctor and visa versa and my mother has given the doctor permission to talk with them. They always let me know what is going on of course but if they have questions about medications or concerns about issues that come up they can address them faster than it takes when they have to go through me as the middle man or if they can’t get hold of me. I have also learned how valuable having a geriatrician can be since they are less likely to write things off as age alone.
Learn about your LOs medical history. Either be actively following them now or at least have them tell you about it while they still have a memory. My mother had several serious concussions when she was young which may or may not be part of her cognitive decline now as well as having some non-allergic but still unwanted reactions to drugs.
Remember that the whole experience is as new to them as it is to you and that they want desperately to be able to do things they have always been able to do and they usually don’t realize that they can no longer do them. Have compassion for them but don’t forget to save some for yourself.
Learn about what types of products are out there to keep seniors safer and make life easier. I wish I had known about some things from the start that I only learned about after trial and error ordering things and ending up on a ton of mailing lists. I can now peruse them for ideas at least.
If possible, talk with family members about what and how much each is willing to help with. Obviously people’s lives change so this may change as well but at least you have an idea of who wants to help. That includes who will help with or take any pets.
Delegate responsibilities.
In reading all the confusion people have about legal roles, I would recommend learning the responsibilities of POAs, MPOAs, guardians, and any others that may be applicable. Make sure that your LO has done the legal work to assign each while they are able. Don’t be afraid to admit that you are not comfortable with any position you are asked to do at this time. I know I do not want to be in charge of my mother’s finances and made that clear.
Remember that you have the right to a life too. If you don’t take care of yourself first then you will not be able to help anyone else.
2. Recognize that at some point, you will need a team of people to help.
As others have said, it is important to talk about these issues well before there is a crisis situation. Bring it up with parents and keep bringing it up. No one wants to talk about their own aging, one's potential need for care, much less one's death. But if one is lucky enough (?) to live very long, the prospect of growing care needs grows even for the most healthy/active of us as we get into the very old ages. And even for younger parents; illness and/or accidents can happen in the blink of the eye; SO TALK, PLEASE TALK with each other about all of this. AND GET your documents and arrangements in order (All of this is nothing else!): Will, Trust(s), Power of Attorney, Advanced Directives, naming a Health Agent, working through prepaid funeral arrangements (or at least discuss what you want), Life Insurance, where the documents are, who is your attorney and what to do if disaster, illness, and accident happens OR you just need help with aging issues for a while.
What to Know, Do, and Get
1) Each State has unique laws regarding end of life matters (such as Wills and POAs) - do NOT assume what a friend or cousin tells you in a different State has any relevance to what you need to do for your parent living in yet another different state.
2) Get proper legal advice, as there is no do over! NOT knowing, not understanding is NOT a defense if it was done wrong/improperly. And get the right type of attorney: Wills, Trusts and Estate for end of live planning and Elder Care Attorney (may be one in the same) if there are issues involving competency and likely need for Medicaid-covered long term nursing home coverage.
3) Understand what insurance your parent has and which thing is or is NOT covered. Medicare (if 65+ and for some certain illnesses) DOES NOT COVER: long term nursing home costs nor home health aides to do things like cook, clean or provide companionship. Medicaid may cover long term nursing home costs, AFTER your parent spends down: that means ALL assets are gone including the family home if single (if still married, "spousal improvement rules" can protect half the house), IF any transfers or shifts in ownership of said assets was NOT done fully 5 years BEFORE your parent needs long term nursing home Medicaid coverage (this is the 5-year look back provision, learn about this key part of Medicaid). Medicaid may pay for aides to come to the home to help, but most States have LONG WAITING periods (years) before an aide is even available, do not assume this is a workable solution unless confirmed with the State Medicaid office. Does your parent have long term care insurance or not; and is that plan solvent (many have become insolvent and provide no benefit, they are bankrupt). That is do NOT assume just because they have a policy (can show you paperwork) that it is or can provide any benefits if needed; check and confirm it. Is your parent a Veteran? VA may cover some things. Does your parent have any "supplemental" insurance: retiree, Medigap or other and what does that cover OR NOT.
4) What accounts of any type does your parent have (bank, IRA, 401K, pension, money market, brokerage, loans (car/mortgage), all utilities, subscriptions, cell phone company, on and on) so you know if you have to step in and take over paying. Set up online access too, easier if you have to take over. Get on one bank account with your parent so you can write checks if you need to/or pay online.
5) Taxes -- who is the accountant. Get all the tax info you can
Caregiving is the day-2-day AND all of this. Get Help, hard to do solo for years. Be realistic.
Hired caregiver information would be good to include in your resource. I have learned the many different facets of caregiver finding ,hiring and the diversity of care they give. Many hired caregivers want to do the care as easy as possible for themselves which may be in conflict with the care needed.
Specific expectation of the caregiver based on the information of medical and therapy doctors is needed. And accountability which can be challenging.
I should have just visited when I was able & left all the work & caregiving to him. Lesson learned the hard way. The one who suffers the most is the elderly person.
My daddy had ALZ - by the time I got him to a doctor to diagnose it correctly he was really bad. The insurance company kept delaying the psychologist and when I finally got one that could explain to me what was going on - the insurance company dropped him and I had to find another. I finally found a friend through a friend through a friend that I asked deep deep questions about and then finally found this website that helped me.
The biggest thing is to find someone with HANDS ON EXPERIENCE to help you out! Visiting Angels or someone like that may be of assistance.
Under KNOW YOURSELF
I would say have a clear idea of what you will/can do and what you won't/cannot do. For me I was lucky enough to be an RN who loved her work with the elderly. However, the burden and angst of that work let me know from the get-go that I could NEVER do one on one 24/7 care of a family member, no matter how well intentioned or full of love for them I was.
UNDER BE HONEST AND OPEN NOW
1. Talk about the future. Talk about death and dying.
2 Talk about paperwork (POA/Wills/Advanced Directives.
3. Talk about elder's plans for when things get too tough to be independent. Talk about what they want done and what they don't.
4. Be honest about what YOU can do and what you cannot/would not/will not do.
5. If your elder says "I don't want to/won't talk about all that "stuff" then tell them that YOU WILL and YOU NEED TO, and then DO talk about what you can and cannot do.
Your own family (spouse, kids) have priority over parents no matter what.
Sometimes the "best" solution is the least bad option (in most cases there is no perfect solution no matter what the LO thinks).
"Best is the enemy of better".
There is really no such thing as "living independently" as long as the LO needs any kind of help on a regular basis in order to keep or maintain themselves or their house (being in their home doesn't mean they are independent if others have to orbit around them to make it possible).