What I've learned in this brief caregiving time has me wondering, should I get this into some kind of legal document?

Dear Scout0421, I've been the weary, overwhelmed primary care taker for my Dad back in 2005-2008, but my mother was strong then and interfered at every turn with his care (makes me so sad). Shortly after he died in 2008 at almost 90, my mother had a serious low-sodium episode (low-sodium at "11" is an emergency and it could have killed her, it makes the lining of the brain swell). In retrospect, I believe that triggered the slow decline and dementia. I over did my care taking "duties", the kind-hearted dutiful daughter with 2 sisters in other states who are retired, financial well-off, but were completely un-involved and frankly didn't care, about mom or me. They were thankful they could pull out the "live out of state" card for not helping. But they couldn't even make a monthly phone call all those years. ANYWAY, it took my getting cancer to force me to step back and them to step up (at little tiny bit, mostly to get their names on mom's finances and learn about how and when they could get their CD money inheritances). *Sigh* ANYWAY, I say all that to tell you what I just learned about in the past month. You can sign up for hospice if your parent is diagnosed only with dementia... (!) And it's FREE... and it's the best, most hands-on, professional help I've had for my mom. I was too sick last year when I was first getting diagnosed, so my sisters and my good-hearted niece who lives locally, some how managed to get mom into the Assisted living facility mom liked and had "claimed" was where she wanted to go "when the time came". She wasn't happy, but at least she was safe. The assisted living arrangement lasted about 6-8 months until her outbursts and anxiety increased beyond AL standards, so she was moved into their Memory Care unit. Then she had a low-heart rate episode, and in AL and Memory Care, their first and only option is to send the person by EMS to an ER. This was the 2nd episode of EMS to the ER. The doctor called me and my husband (at 3 am after other calls from the ER that night) and said mom was beyond what a normal AL and Memory Care facility will handle. He recommended I contact Hospice... And sure enough the next day after mom was returned to the facility the AL director called and said if I didn't get Hospice for mom, they wouldn't keep her (and that meant I'd have to find a nursing home and put mom through all THAT... and I'm too sick and dealing with chemo and doctor/specialists' appts, etc. etc. to manage moving mom - also know moving would be EXTREMELY upsetting to her - and she would likely be completely unmanageable). So... for over a month Hospice has been on board and they have been SUCH a blessing... for ME and for mom. Hospice is also available to come to the home. So, FYI... for YOUR sake and your mom's now - please at least talk to a good local Hospice organization, get some answers about if, what, and how they might be able to step in to help YOU and your mom. A geriatric nurse visits once a week or more, gets vitals, health check, etc. Nurse-aides were added for twice weekly visits to help with bathing, hygiene, etc. They also called me last week and reminded me if I gave the "OK" they have trained volunteers who will just GO VISIT and sit with my mom... (and my mother loves visitors). My mom will turn 98 in a few weeks (!) but she has no significant illnesses like cancer or heart disease or any other serious illness. The Hospice head nurse who first met with me said my mom's episode of the low heart rate that caused her to be "unresponsive", when the AL sent her to the ER, was caused by mom's heart just being OLD and worn out... and likely she'll have another and maybe for her sake she'll pass away there at the facility that has become something secure she is aware of, again, she's got dementia, but she knows people and family... so it would be very stressful if she had to endure going to and staying in a hospital. If not Hospice, whatever your mom can afford, please hire as many helpers to come in as possible (for your sake... because I wish I could have had real help AND I wish I could have faced my mom's rage if I had forced her to move to AL sooner... I tried, even tried and got her signed up for a two-week "respite care", but when it came to the final signing off on it, mom was still too strong willed like always, and wouldn't go. What if I had stepped back years ago before I became so stressed, overwhelmed, discouraged and finally even angry for the years of my own life I'd lost... maybe I wouldn't have succumbed to cancer, and of course, I have an "incurable" bone/bone marrow cancer. I lost a whole vertebrae, so I'm in pain 24/7 and no surgery can "fix" it. So, I will NEVER get my "life back" or get a "break" and resume living and enjoying my home, husband, gardens, pets, vacations...) Don't wait too long my dear.. to ease your mind about getting your own affairs in order as you asked about... GREAT idea... it will help ease your mind! And don't wait too long to get help if you're at all stressed or overwhelmed now caring for you mom. Sincerely - Suzi

Yes, I'd like to have a nice heart attack or even cancer than live for years with dementia and as a financial and emotional burden to my children. My parents and my husband all died after brief illnesses so I have not been called upon to be a long term caregiver. So why am I still taking preventive meds for high blood pressure and high cholesterol? The real reason is to please my M.D. so that if I am in paid he won't turn me away!

Everyone, needs a will, revocable trust, and power attorneys both for finances and healthcare. You will neither live forever, or if still alive, not be able to care for yourself before you die. It's life; it's death. See an Elder Law attorney. Such an attorney knows how to do this and how to navigate the needs of families.

I recently compared assisted living in a facility versus 24/7 home care. I was surprised, but in California with new rules about in home caregiving, it is very much more expensive to keep someone in the home when they need full time care. Also, in my experience not enough care in home may "save" money out of pocket, but can harm the caregiver/givers.. Caregiving is a challenging job. It takes good health, caring, and stamina. It is never ending. At a facility there is more than one person and typically 1-2 shifts a day.

Thanks Wally003. My mother is in a small room, about the size of a college dorm room, with a roommate (although the latter has been in the hospital for a couple weeks). It's not luxurious, but because she is bedridden there isn't much need for something fancier. Some of the people living there have their names on waiting lists for other places, some of which are much more expensive. What you described seems much more luxurious, but as you mentioned it is AL (as opposed to a nursing home). I'm still wondering what the other poster gets for $330,000 (unless it was a typographical error).

I've read that in the south central part of the US there are nursing homes as low as about $50,000 per year.

Keeping a binder on all important paper work is very important . I'm my father's health care sorrgant my sister is the power of attorney she is 7 hours from the house which leaves me doing all the care I have other siblings but all they do is cause problems accept for my brother who lives out west. I also took care of my late mother with the same situation my father was in shock by her terminal diagnosis and did absolutely nothing to help me care for her. Then decided to start falling apart a week after she passed on. Fairness factor zero just stay calm and organized make sure you have me time it is critical or you will fall apart.

We are visiting an elder care lawyer that we used for my MIL very soon. We are in a different scenario. We don't have children so we are trying to figure out how to plan best. Long term health care is too expensive for us in our 50's and I've so far seen three parents who paid for it for years and never used it so we are just doing some solid financial planning to afford buying into a continuum of care facility . Someone (a nephew) will have to be given some control at some point or we will need to give a lawyer POA, which kind of scares me. After taking care of three elderly parents (one still with us) if you can afford it, I think it's the best choice overall. I wish my in-laws had chosen this years ago instead of doing no planning and expecting their children to plan and pick up all the pieces when they became ill and couldn't live on their own. Certainly no one should make their children do that and I'm surrounded by it with so many of my peers and their silent generation parents who seemed to think they'd live forever on their own until they died peacefully at home. I learned a valuable lesson from seeing my Aunt handle her and my Uncle's later stage of life. They moved into a continuum of care facility (one "campus" that goes from independent to assisted) when they were only in their early 60s due to my Uncle being in a wheelchair. My Aunt did not want her children to worry about their care as they aged. And although they certainly were around as much as possible (they all lived in another state), no one ended up feeling burdened with care at the end. Both of them lived into their 80s and both ended up in the assisted toward the end. It was the best situation in the many caring/aging scenarios I've seen and been a part of. On the other hand, my grandmother ended up with dementia in her late 80s and went into one of the best facilities in the country. She ended up living to 100, her trust money running out several years before she died. They almost took too good of care of her, she never spoke for 10 years and basically ate and sat in a wheelchair. I'm sure she would not have chosen that and my mother told us emphatically to please never let her end up like that (she was in assisted living with Lewy Body on hospice for 5 months before she died). One thing I've learned is that no one can predict or timeline how this plays out in older years. I think continuum of care provides the best safety net for you and your loved ones and you can come as close to planning it all out as possible. I'd prefer to put financial resources there instead of long term health care. Of course, if you can afford both, you'd have all bases covered.

Hubs and I have a will. In it, we do make our wishes VERY clear, but as far as the EOL actual protocols, we have not done more than the basic living will, and the basic DNR forms. POLST is to do with the dr and we're not quite there yet, (66 and 61). In a few years I will set mine up and hubby can do as he pleases.

Now the will is done, we have to work on some parts, the personal stuff. Both of us have DNR's. The kids know where to find the paperwork. Our eldest daughter is our executrix. I don't think there's a person I trust more than her.

There's a lot of personal bequests in the will--whatever, DD can handle it with aplomb. I simply DO NOT want to be a burden in any way, shape or form to my kids.

I agree with the OP---being a burden to your family can suck the soul out of them. We have fought more than we ever did as "kids". 3 sibs are simply MIA and I was fired from CG for mother and banned from the house where she lives with brother's family.

Mother and dad didn't pre-plan, and they found out, as so many of the older generation, that SS simply does NOT cut it, financially. We didn't think SS would even exist at our retirement, and to our immense surprise, looks like it will. But we saved 20% from day one of "real employment" and have invested carefully. We will have much more money at our disposal than we have now. GREAT!! And we plan to spend it.

Every family is different and some can take in their aging parents, relatives and not miss a beat. Personally, I have seen exactly ONE family where this was case. ONE. Out of, oh, my, dozens? And I think it was just due to the fact the wife who acquired a live in MIL upon getting married was an absolute saint.

Yup--get your ducks in a row and make all your wishes legal AND make sure you have money set aside for the care you might need....the best "gift" you can give your family is independence from your care. Then they can enjoy you as a person, not a "job".

(Fully understanding that in many cases, this simply can't happen--but if you can plan for yourself....that's what I meant.)

Tothill—I ask myself what is better, the way people would just drop dead when I was a kid or now when death is expensive, complicated, endless and psychologically destructive to patient and family.

I’m thinking it was better to just drop dead. I’d prefer it.

Yes get legal document stating your wishes. I’ve heard of a living will but not sure that’s what you call it. But I am sure you should make your wishes legal and binding.

Enjoy your life because you can find yourself handicapped and needing help suddenly and surprisingly.

I’d also put something in the document about when and under what circumstances you want your wishes set in motion.

I am handicapped and unable to work. But so far I don’t believe it’s strained my husband terribly. But he is still working and I can ‘gimp’ around and do household tasks to a point. I PAY my daughter to clean thoroughly every other week. I also try to ‘treat’ my hubby to things he enjoys. It’s working for now OK.

Ultimately it’s best to live one day at a time.

LOL...and although I urge you to get it legal, I haven’t done my legal paperwork yet, even though I keep a lawyer for advice. I’ve become spoiled. Well I was very sick this last year from January until April, lots of doctor appointments. I don’t do hospitals unless I’m unresponsive. I have a fear that’s irrational.

You’re so young to be hit in the face with this but also, lucky you. You’re ahead of most people.

Take care of yourself.

to ------ jacobsonbob

my mom also pays about 70,000 a year assisted living. my mom has a very nice sized room. with small kitchen.

its been a very good fit for us all. and they have a memory care building "next door"

they do all laundry, meals, room cleaning, meds, supply TP (may be forgetting something)

they also have some free meals for family, special parties and some holidays.

she pays for personal items.

Agingmyself, I think an important aspect that some DIYs overlook--that the Healthcare Directives document may not be appropriate for the state that they are living in and thus is not legally binding in their state.

Betsysue brings up a very good point. When you purchase Long Term Care Insurance, make sure that the policy covers both assisted living facilities and skilled nursing home facilities and also look into a Rider for Home Health Care (if the company has one). The elderly have so many options now that were not available even 10 years ago. So when you get a policy, you need to make sure that it covers as many options as possible. Expensive--YES. But then, so is being taken care of by agency caregivers in your home or living in a facility. And as many of you know, taking care of a family member in you home is not always the best solution.

My parents bought their LTC Insurance when they were 70 years old. My Dad did not use his LTC Insurance as he had a heart attack at the age of 78 after 5+ years of dealing with CHF and Pulmonary Fibrosis. He was using Oxygen 24/7 and he had trouble breathing. After Dad died, Mom and I became “roommates” and lived together for 9 years. Mom says that if we had not been living together that she would have been in an AL 4 years ago. Mom, age 87, moved into a LTC facility in May 2017 after being hospitalized and now is in a Memory Care Unit.

She is private pay because we have 2 farms. Her LTC Insurance pays for half of the cost and her SS & retirement benefits pays for the other half of the cost of the nursing home. The LTC Insurance pays for 1825 days (= 5 years when Mom will be 92). While I don’t know if she will live that long, she just might since her older sister was 91 when she died in 2017 (1 week before Mom was hospitalized.)

I will have to change my POA and POA-Healthcare as Mom is currently my POA with my Brother as Secondary and I would prefer that my Brother be Primary and his son be Secondary. It would be a bit awkward if a person who is in a Memory Care Unit (and cannot even remember how to write a check) needed to act as POA of someone else. C{:--)

Many good thoughts here. I've looked at the 5 Wishes; but that document is not legally binding in all states.
If all your children would agree to honor your personal wishes--and don't disregard the possible influence of their spouses--you may not think you need anything more than your letters. However, a legal document would give them the assurance that you gave serious thought and preparation and didn't act on a whim that one or more of them might want to dispute with their siblings when the time comes.  And, it might include situations you haven't thought of.
Also, if you see an Estate Planning attorney, you will very likely learn some important techniques to both prepare for your long-term care and to see that your assets are used or passed on as you want.
The attorney could also review any long-term care insurance you are considering and make recommendations about that.
LTC insurance in recent years has become terrifically expensive, IMO.
Kudos to you for looking into this now! As you know, it's difficult for your loved ones to deal with this when you're in need.

I have had this discussion with my 22 year old son. And my mother has had it with me. If I cannot manage my ADLs, I do not expect my children to look after me.

Mum has been a hospice volunteer and at 84 has watched the demise of many of her friends both physically and mentally. Very few people now drop dead, they have long drawn out deaths over months or years. What is better?

We have women on both sides of my family who lived healthy active lives into their 80’s and died after a brief illness. This is what I hope for me.

Mum is happy that Medical Assistance in Dying is available in Canada. She has it in her Heathcare POA, but it can only be implemented if she is mentally competent. If she gets dementia, it will not be an option for her.

All our documents were prepared by lawyers.

Your life parales mine and although I am not in my 40's, I have had the same thoughts that you are going through now. Having been a nurse in nursing homes, I do not dread going to one in my final days and I have expressed that to my children. Would my children fight my decision, I would hope not but to express my wishes in a legal document is something I never thought about but it does sound like a good idea. I already made arrangements for my husband and I to be cremated and went to a beautiful Church that has resting places for our ashes and I am currently paying for one of their spots in their gardens. Other than that, it's a day by day thing with my husband who has dementia and each day, he gets a little worse. You mentioned a directive which my husband and I have at our medical facility and whether we want heroic measures done to be kept alive in our final days, etc. Because of your age, I assume your children are still young, mine are adults, so it's not something you can discuss with them. But you're smart to think about it now. I know that they have documents at Staples for such things and once you fill them out and have them notarized, I believe they would calm your qualms.

Shakingdustoff--I'm curious as to why the annual cost for a facility for your mother would be $330,000. We are "only" paying about $73,000 per year for my mother's nursing care. I know it varies among different regions, with some areas costing over $150,000 per year. What would be provided for $330,000?

Hi scout. This is about insurance for yourself and husband.

NO i do NOT sell it but i DO have it and cant telll you how glad i am !

Yes its expensive but certainly better than $100,000 or so youd end up paying out of pocket for each of you.

Im almost 80 and have had it since i was in my 50s when i first heard of it so it it should be cheaper for you.

It is a comfort to me to know that we can go from our house straight to assisted living or skilled. I have no interest in staying at home waiting for meals on wheels for our social life if we cant drive or get around.

We also have a trust and medical poas so my daughters dont have to worry about having to pull the plug. (My husband does not have children.)

Make sure theres something in paperwork about pain meds and comfort measues. Ive heard stories lately from people about facilitits denying those when people are no codes and dont want feeding tubes and/or ventilators.

Our insurance covers both assisted living and skilled.

There is a pamphlet that you can fill out called "Five Wishes" and it is pretty detailed with instructions.
As a side note as a result of my being the primary caregiver for my Husband I purchased Long Term Care Insurance. I hope that it will not have to be put to use (if I am that lucky the money is not "lost" the beneficiaries listed in the policy will get the $$) But the house I am living in was built handicap accessible so I will be able to age in place and if I need caregivers they can come here. (That is if I do not move to a location where Medically Assisted Suicide is legal) I figure I do not want any of my family to have to care for me the way I cared for my Husband.
An Elder Care Attorney can help you with trusts and all the papers that are needed to make your life easier.
You need people you can trust to act in your best interest for Health and Finances. It does not have to be the same person.
Sign a P.O.L.S.T. that is more detailed than a D.N.R. it gives instructions and parameters that the D.N.R. doesn't. And the P.O.L.S.T. can always be changed if your circumstances change.
Both the POLST and the Five Wishes can be downloaded.

I also agree, you should consult an estate attorney. This was my MIL did when she was told to get her affairs in order. The trust attorney came to the house and she told him what she wanted. He created a living trust, a will, a durable POA and healthcare directives. It was an easy process and we knew who was in charge of what and how her assets were to be divided when she passed. Good luck!

This advanced directive speaks directly to dementia. I have filled it out and filed it with the wills and the POA papers.

dementia-directive.org/

So I'm pro planning. However, putting someone in a facility doesn't completely relieve you of caring for them. It just changes which burdens you bear.

We all have to accept that caring for those who cannot care for themselves is part of the human experience. We gladly care for the very young and we must care for the infirm and very old, too. You can arrange to pay for help to do the physical labor. However, you can't easily keep people who love you from caring for you when you can't care for yourself. Maybe you wouldn't even want to-for their sakes as well as your own.

Scout, yes, do have your desires and wishes incorporated into a Living Will, Advanced Directive, or whatever it's called in your state. Tailor it to you needs. You might even want to discuss it with your family first. They may wish to contribute and/or offer suggestions on their own involvement.

But I would suggest considering an estate planning attorney; it's a broader concept than elder law, and you're still quite young yet. EP attorneys look at the entire spectrum of life, death and assets, regardless of age.

Either way, assistance by a qualified and reputable attorney, with whom you feel comfortable, would be better than a letter, which might not be considered valid if it's not witnessed or executed as a properly prepared legal directive would have to be.

PaniniSandwich, I just viewed the 5 Wishes, the sample copy, and was impressed with the "answers" and that one can cross out whatever answer they don't wish in the document. For those with an extremely tight budget, that document will let the rest of the family to know one's wishes, then having to guess or fight with each other about what the patient wanted. Thanks for posting that :)

Hi Scout,

I agree with contacting an Elder Law attorney. If you don't have the money or the time you can always print off an power of attorney document online and have it notarized but sitting down with an Elder Law Attorney is the absolute best way to go.

I don't know if anyone else has seen this commercial, I saw it last week and thought finally! If you Google 5 Wishes it will take you to this website agingwithdignity.org/ where you can either fill out the form online or order copies of the document to be filled out at home. You can also Google 5 wishes pdf to see what the form looks like before you purchase it and if it covers what you're looking for.  I find some of the questions cumbersome and a bit wordy, like they are trying to cover everything and anything but it might be a good place to start for you to get an idea of what to talk to the attorney about.

I saw the commercial and thought THAT'S the kind of commercials we need in today's world, to get the word out because people still don't want to talk about it but it's so important to know. I feel like at the end of every pharmaceutical commercial they should say "please talk to your loved one's about what type of care you would like for yourself......"

Yes, I would talk to an elder law attorney and have them draw up Advance Health Directive, POA and estate planning documents, and then be sure to update them periodically, as laws can change over the years. My husband and I need to do this for ourselves also. I am in my late 30s, he in his early 40s. I absolutely agree with you that I don't want my kids to have to worry about taking care of me when I get to that point. I too would rather go to a nursing home or assisted living when that time comes.

Also it's important to plan financially for the future as well, and have the means put into place for your wishes to be carried out should you be unable to make those decisions for yourself.

Scout0421, it would be better if your wishes were placed in a legal document such as a "Medical Directive". Make an appointment to talk to an "Elder Law Attorney" about said document.

You are so right, caregiving can be frustrating, tiring, and overwhelming, and it can also do damage to your own body.