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.
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).
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.
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.
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.
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.
2. Recognize that at some point, you will need a team of people to help.
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.
In addition to this Forum, you can also join a dementia support group through your state chapter of Alz.org. When you have issues, bring them up at a meeting for multiple suggestions. If there are non in your area, each state has virtual meetings.
There is also the Alzheimers Foundation that has plenty of on-demand video programs.
There is already good advice given about family and your health first. Financials are always a big concern which is why seeing a legal specialist can save big $$$$ in the long run. Try not to pay out of pocket for your parent's services but legal help should be paid for by parent's funding.
Welcome to the group!
In hindsight, I should have conveyed to him that rather than he try to help directly, he could help indirectly by helping me to help our mother. For example, since cooking for us took a lot of time, he could have brought over a dinner or had it delivered once in a great while. I supposed I didn’t bother with him because he didn’t have the sense on his own. But sometimes, we just need to speak up and tell people straightly what’s on our mind.
Call on the troops...enough said!
Ireland
Don’t listen to others who insist that you should be doing the work yourself. If someone doesn’t respect your opinion, tell them that they are welcome to take over the caregiving responsibilities.
Educate yourself on whatever diseases, illnesses or disorders that they have.
Obtain a medical power of attorney in order to speak directly with the doctor to get clear information.
Reach out for help when needed.
Don’t neglect your own needs. Take regular breaks.
I am caring for an elderly mother with mild to moderate dementia, & history of hemorrhagic stroke. When my wife & I arrived my mother was on Hospice. Here's what I wish I had known before getting into all this:
The amount of constant supervision required
Mom can be in her room, TV on, quiet as a mouse. What you don't know is that she could have a sugar canister hid in there & be eating handfuls of sugar (true story), she could be pulling everything out of her closet & hanging it all over the room, she could be calling her friends & telling fibs about her care, etc. Not to mention, bathroom supervisions.
The amount of interaction required.
My mother does attention-seeking behaviors if left alone for more than 15 min. She will make up medical conditions she thinks she has & insist she go to the doctor or ER, she will tell grandiose stories that are nothing like what happened, she will snap and become aggressive, etc. It seems the better her health becomes the worse she behaves. Her hospice nurse explained she is afraid we will think she is too healthy to require help & may leave. Knowing why doesn't really help.
Dementia patients do best in a routine.
You will have to set a routine and follow it. Deviations from the normal routine will create issues for days. Committing to honoring a routine seems easy enough at first, you did it with your kids, right? Not so easy when you are ill, when you have pass on work or friends because the time doesn't work well with the routine. Every 2 hours throughout the day there is something in my mother's routine (bathroom break, meals or snacks, exercise, etc.)
You won't have help
Everyone will suddenly become too busy to help or visit or call. We came to help my sister with my mother's care. We figured (3) 8-hour shifts per day should be easy with 3 people. Within 6 days, 3 became 2, & 12-hour shifts every day is hard. You may think, "Well, she has to sleep sometime, right?" Yep, but not always when you are used to sleeping. Caring for a dementia patient is not like caring for a baby. She won't cry when she's awake & needs care. If you doze off on your shift, that's the night she wakes up & decides to trot down the street in her diaper & t-shirt.
You won't get a day off.
Even if you schedule to have a family member spend the day with her, don't count on it. It's amazing the amount of emergencies that happen to prevent loved ones from giving you a break. Even if you do get the day off, you will get phone calls for appointments, questions on care, or photos of the outing to constantly remind you that your mother is your responsibility.
It's the hardest job you will ever do with the least amount of appreciation.
Despite bending over backward, doing the best you can, cooking the best you know how, & everything else that gets crammed into your shift, you most likely will never hear the words "thank you" from patient or family members.
Expect depression - for the patient and you
Use forums like this one, it's your best bet in navigating care & the resources available. There is no one agency you can call that will connect you to all the services and care available.
Use Adult Day Care!
Check to see if you have a PACE (Program for the All-Inclusive Care of the Elderly). We enrolled my mother in PACE in Nov '23. PACE has its own insurance and accepts Medicaid & Medicare with no OOP for 55+. We chose PACE because the Adult Day Care provides doctor, nursing, physical therapy, & occupational therapy ON-SITE. What a relief it is to have PACE pick my mother on weekdays and care for her from 9a-3p, shower, exercise, schedule appointments, take her to and from appointments, & keep her entertained. They have outings & a daily schedule of activities. They feed breakfast, lunch, & a snack, & when she gets one of her new medical conditions they check it out. She has friends, enjoys her day, & is tired out when she gets home. They handle transition to MC when needed. & RESPITE. #LIFESAVER
Now after three years I thought I’d be at least halfway done with managing this by now.
My parents did not put their affairs in order until very recently and I am now struggling to get my mother on Medicaid now. The stress of the uncertainty is destroying me. Tried to get them to consider taking care of this on their own, was met with anger and dismissal as if I did not have a brain in my head.
No one prepared me for the anger and resentment and depression i am feeling.
Then after their death and funeral and have cleaned out their room (and/or home ) , how exhausted I would feel after the caregiving is over . Just finished 3rd stint with a rough final few months , still can’t sleep well. This happened the other times as well. Still feel on high alert , but totally exhausted at the same time . I wonder if other’s felt that .
I wish when I was a teenager I told my mom to start planning her shit. She had me later on life and I'm an only child. I am trying my best but I am about done dealing with this. I went from loving her to having a lot of anger and resentment towards her because of how messed up everything is due to her poor choices!
My dad passed quickly. My mother has now come to live in an assisted living near me after dad’s passing. She fell broke, her leg and is now in skilled nursing w Medicare coverage coming to an end
and is not doing particularly well in physical therapy.
i am also struggling. I can’t really bring her into my house. I don’t have handicap bathrooms, etc. and am recently single. I need to rebuild my own life. It is OK not to ruin your life for them
While it hurts, I am looking for an appropriate facility. It may not be the fanciest, but she will be well cared for.
I am also I’m forcing myself to accept - I may have honestly a better heart than she does. She didn’t make some of these sacrifices for me. She may think she did, but she didn’t.
I had to force a POA arrangement on my parents late life
they purchased no gravesite
they gave no health directives.
And now she’s just passive and child and somewhat fearful.
I was never allowed to be fearful as a kid. I am doing my best, but absolutely you do not have to sacrifice your own life.
Hopefully, people will read these posts BEFORE they decide to quit their job.
going into year 4 at the end of next month. They have become frailer but other than that no change in their overall health. I really really wish I did not retire because I enjoyed my job. What the hell was I thinking? They could live to 100.
This is why they say "wisdom with age."
Be as gentle on yourself as possible.
See if there is a way (?) to get back into your field, even if part time or even if you can do self-employment somehow. This will give you energy, more day-to-day enjoyment, and perhaps a little income.
Get caregiver(s) in there so you can take some - even a little - time to yourself/self development. It isn't too late . . .
and yes, they could live to 100. My client just died last week at 104.
Gena / Touch Matters
* Put yourself first so you have the energy, time, and focus to care for your parent. If you are not available to yourself, you are not available to them.
* Have all the legal paperwork in order - so you have whatever authority you need, be it medical procedures to selling a house.
* Get caregiver support.
* Deal with whatever feelings of guilt (is wasted energy) or other emotions you have when they come up. Do not stuff in feelings.
- Create / enlarge your network of support(ive) friends, neighbors. Enlist, as you can, your parent's neighbors/friends to support you as you need, i.e., visit them, take on a 2-4 hour shift as they can.
Do put your children first. They need you. Find ways, as is possible, to include them in visiting or care if they are at an age where they could participate. Just 'talking' / visiting with your elder parent is a huge plus (for the grandchild).
As you can / need, hire a medical or 'regular' social worker to support you/r parent needs.
As it may serve you, get into a support group. Call local association or county "senior services' and see what is out there.
Do not burn yourself out. You, your kids / immediate family, and your parent(s) will suffer the consequences. Exercise (with your kids (?)) eat healthy, get enough sleep.
Be sure t set boundaries and first know what they are ... and before that, realize how important boundary setting is. Listen to your body and head. Realize you do what you can and then you have to let it go. Prioritize what is REALLY important to do and let the other stuff go.
Except / Expect / Realize that an older parent may lash out at YOU as they are / feel closest to you. Certainly, this doesn't feel pleasant AT ALL (and it may not be a situation you'll encounter). If it does, realize they are frustrated at the situation they are in, scared, and just needing to vent. After a SHORT while, excuse yourself for 5 minutes or five hours. Do not be a punching bag. Get a caregiver in there ... find volunteers at a church ... or volunteer organization. Widen the circle of support for you/r parent, which will provide more support to you, too.
Gena / Touch Matters