Update:

Yeah, letter from the IRS today, nothing worrisome in particular, just a hold up to close the estate. "We're holding your refund until we finish reviewing your tax return." I wonder which one they're talking about. :seeingstars:

I am so grateful that the on ground people I have for mom are on the ball. A couple of weeks ago they noticed her surgical site looked weird. I had them take her to the surgeon who was mystified and said it was probably a change in blood flow. :blink: OK...

4 days later another caregiver said it was changing and sent a photo to her (private) nurse. He promptly booked/took her to her regular Dr who examined it under UV in a dark room and started her on an antibiotic course. Nobody really knows what's going on, but we're all hoping for "small subcutaneous infection" to be remedied in a few days. We'll see...

I have a yard full of contractors and jury duty in three weeks (which I postponed for the surgery 5 months ago).

Suitcase handy...

This Friday
 

my precious mom is coming home from being in a physical rehab facility for 2 months following a major stroke. I will be her care giver. Although the CNA's, PT and OT have taught me so much related to caring for her I continue to feel inept. The thought of this dependency on me is overwhelming. We do have home health coming in starting next week. Mom is a one person assist with almost everything. She lost most of her vision, her speech has been affected and her left side is basically useless. I try not to think about the future too much but right now I seem to be doing a lot of 'what if's.' My health is not too good. Open heart 4 years ago, 1 MI and the constant fear of another one. My 35 year old daughter lives with mom and I. She is not a kind person and is a hindrance in most ways. Always wanting to argue....Not sure if I can tolerate that part too well. My mom has always been my daughter's enabler and subsequently it has created something similar to a tyrant. Mom has refused to make her move - only to rescue her one more time. She is a full time college student so at least she is earning a degree with good grades.
All I can do is take it one day at a time.
I am grateful for this place to simply talk it out and know I am not alone.

I would like to say great job to those of us that have had to take care of parents, spouses or ex spouses. It's not a easy job cause if it was everyone would do it. I know just watching my best friend of 14 yrs and now wife that she put up with a lot of abuse and shit taking care of her ex partner with cancer cause she promised hym she would and to me that is commendable . I came down to help her with hym and he asked me to take care of her and my wife's daughter and also to shave hym. Dignity is something I gave my Mom and Dad when they were passing. im in End Stage Kidney Disease and have many Dr Appointments that my wife sets up with the right Dr's, takes care of the house and her daughter plus going to college on line. Sometimes I don't know how she does it, but I appreciate her and love her so we do what we can. I wish she had better insurance so we can get her taken care of also. Just ranting today but GOD,Great Spirit blessing on all that have to do this.

TIMBERWOLF

Today she thought it looked worse so her RN went to check it himself. Yep, it looks worse, he sent me the pic, we/he decided that with a three day weekend coming up it wouldn't be a good idea to wait for her regular Dr. He took her to ER where they did some bloodwork, x-ray, and general head scratching. Something isn't right but nobody knows what, another heavier round of antibiotics for now. Next week back to surgeon for an exam, maybe a tissue sample or something if no change...

I cannot believe what good luck I have in this RN that I found for her, he coordinates everything, does all hiring and payroll for her other helpers, and on and on. It's 8:45pm where she is and he just called me again to tell me the med change and let me know he had gone to the drugstore and got her started with this first night dose. Her meds are all mail order, so he is really going out of his way to do all these extra things. He also worked in the local hospital for 17 years, the last five in oncology, so he knows the local surgeons, Drs, and all the nursing staff.

I, of course, am stuck here for a bit. I gave up on her attorney and am now working with mine while I work on my own revised will, to set up a game plan for what happens to her if something happens to me. (I'm the only one who knows how all the moving pieces fit together) Week after this next one I have 5 days committed to jury duty. I hope everything holds together for a couple of weeks, or better yet resolves.

The good news is that mom feels fine, not sick or in pain, likely enjoying all the extra attention. :)

Caregivers
 

My turn is coming, my mom is 84 and we are working on a plan. I am scared for the years ahead. I am the only surviving member of our family besides mom so it all comes down to me.

You're in the same boat I'm in. No help or backup. My mom is also 84. If your mom has friends or a church or something that might be a start.

I'm glad you're working on a plan now, there are more details than you can imagine. I thought my folks had living wills, it turned out to be just pour over wills and asset paths. When my father died last year was when I figured out they had changed things recently, and apparently not finished.

Figure out all you can now before the pressure hits, you'll thank yourself later.

Thank you, my mom has a big support group where she is but I have to move her because she lives too far away from me. I wonder how that will effect her quality of life.

Chad, Kelt lives far from his mom and he has been able to manage it. I am sure he will come in and give you some ideas.

My role in order to "take care" of mom is to NOT move. Like, I no longer see myself as having that choice since we live near each other. My sister is on the other side of the country. Don't feel bad for me though, I like where I live. But, there are also a couple of other places I have fantasized moving to. Also, my sister will be very involved with getting/keeping things set up for mom. I won't be alone in it, even if I lead it.

I don't expect that my mother will ever live with me though. She has a large long term care insurance plan which gives the option for people to come to her house instead of her moving into a facility. She can use her monthly allotted amount however she would like. We hope that unless she has cognitive difficulties that she would be able to stay there until the end.

All of you guys are amazing for what you do for your parents. My hat is off to you. Hang in there.

You touched on something important Dapper.

Money.

If our parents or ourselves were/are able to save/invest/have long-term care insurance; it is much, much easier to ensure needed care, than if we do not.

My parents are very well-off. They both had great jobs and my father invested and saved.

They are now in a very nice assisted living facility. My dad is now 92. He is cognitively intact but never recovered from a hip fracture from about 4 years ago. Most elderly people do not survive a year after one, so he is fortunate in that regard.

Due to their money, he receives the highest level of care for all of his needs. This ensures he does not require a higher level of care such as a nursing home. I do not believe he would survive that mentally and would give up.

My mom is 89. She is in better physical shape and requires a lower level of assistance but they live together in the same sort of apartment. All their meals, nursing care, doctors, etc. are taken care of.

As I am the black sheep of the family and am periodically "kicked out" of the family, though I am a nurse, my father chose my oldest brother as the one to make all of their healthcare decisions and my youngest brother, the total spendthrift, to be the executor of the estate.

It is what it is and though you can sense bitterness on my end, I am glad that they have money for good care.

The alternative is to do what many of you are doing: moving or considering moving parents into your home to provide the care that they need.

Even if my parents were speaking to me, I do not know that I could do it. My parents were/are severely critical of me and abusive physically and emotionally until the day I moved out on my 18th birthday. Coming out as a lesbian put the icing on that cake for me.

This brings me to myself. I fear for my own aging and health. I love my girlfriend dearly but she is lacking in the empathy gene and does not suffer illness or weakness very well.

I had health problems by the time I could afford to purchase long-term care insurance and a private disability plan. Ergo, I will not have that as my parents do.

My recent illness, including spending 5 weeks in the hospital, almost 3 weeks of 3 times per day IV antibiotics through a PICC line from home health RN's (I refused 3 weeks of a SNF for fear of greater expense and catching some other infection) brought all of it into sharp focus for me.

According to AARP: The aging population is growing, and so is the number of lesbian, gay, bisexual and transgender (LGBT) adults who are moving into their later years. In the next several decades, LGBT adults age 65 and above is expected to double, reaching more than 3 million by 2030.

We face lack of family support, lack of resources, lack of money, fear of hostility by caregivers due to being LGBTQ, among other issues.

I guess I am sharing this because many of you are in your 20's, 30's, 40's. I encourage you to do what you can to plan for your later years. It is not just our families that we have to consider but ourselves. We get sick and we will need caregivers.

When I was younger, aging seemed so far away and my whole focus was on my then-partner and raising two daughters to adulthood.

It is not far away at all now.

I'll step in with a couple of thoughts and if there is interest some of us can talk about it in depth. Since this has been my whole life for the last year and a half I could go on forever...

First, Chad, your mothers social support network is invaluable, if she has one now you might think about being the one to move. If she loses it and can't form a new network in a new place you become that too and it can seriously affect her health and your availability of time for anything else.

Second, there are two ways to do this, bluntly it's about money. This is expensive no matter how you do it and you will pay with either cash/insurance or time spent doing things yourself and finding resources through other services/agencies. Each way has its own advantages/disadvantages, my mother has money so I can hire a lot out BUT...

Dapper, are you listening? There are tons of services available to the elderly if they low income qualify. If they have assets, all of that just evaporates. :blink:

I didn't want to move my mother out of her house right away but weirdly it boiled down to transportation. She needed to be taken places because the week my father died their car did too, not repairable and mom wasn't too good behind the wheel anyway. Their town had plenty of options, the big elderly transport for hire system (oops, you can't use it unless a specific diagnosis or are resident in a "community") or the non-profit version of the same for anybody; except she lived one block over the county line. Many small independent outfits to drive folks to their medical appointments - all income qualified - no go if you have resources (and what about things like getting groceries or a haircut?) Taxi? No company large enough to trust and unreliable at best in her location.

The only way I can see doing this from a distance, and I am very fortunate in this, is to not have to work. I do have to drop everything and go, with very little notice, for undetermined periods of time, on a regular basis. Maybe self employed - non-location dependent. It's all about finding good comprehensive systems and then tying them together. My mother lives in a very nice community in an independent apartment with a private car and driver, cook, houskeeping, etc. I have an additional system on top of the one there for private medical help, which as I posted, came into play yesterday, again...

There are several people on this site with a variety of situations going through this right now. Chad, ASK. If you haven't done this or been around it before the learning curve is steep. Voice some of your concerns and folks with matching circumstances may step in or folks like me can give some best guess or anecdotical ideas.

Yes, Sir, I am! Why do you think mumsie has long term care insurance!

The first order of business for me after Dad died was to find mom a good financial advisor. He said that my mother was in that sweet spot place financially where based on her age (and other health data), she should have enough money to live through the rest of her life, including assisted living needs. The other option was long term care insurance. I voted for long term health care insurance, my sister agreed, and mom rolled with it. I do believe I did due diligence in choosing the policy and had enough information to be convinced it wouldn't "go away" or something when she finally needed to access it. It is also very low criteria of medical assistance needed, in order to get it activated.

She put down a HUGE amount of money to buy it in one block. At that time, doing monthly payments meant that if you didn't use it (i.e. died before you needed to access it), your heirs lose it. With buying the the policy outright, and if it wasn't used, your heirs got more than half back. I heard that this changed at some point since we bought mom's policy; heirs will get some money back even if owners of the policies paid monthly for it.

Anyway, the data shows that people die on average between 2-3 years after moving into assisted living. The policy that my mother bought will cover her for 6 years for an assisted living apartment costing slightly more than twice the amount of the average cost of an assisted living facility per month around here. I believe the data indicated that services in her home - even 24 hour coverage- would last about that long, too. I dunno. Then, of course, if she needs more, she still (hopefully) will ahve enough money to cover her until the end. She only spends what she makes per year, pretty much. I DO think it will be ok. Otherwise, I think that my rich sister should cover her costs! lol

Did you look into/encourage your mother to buy long term care insurance after your father's death (I think I asked you once if they had any and you said no?). If not, why not?

I have heard that the price for long term care has gone of astronomically since my mother bought her policy 6 years ago. It had already gone up a great deal at the time she purchased; supposedly when these type of policies came out insurance companies set the cost of those policies too low and were scrambling to get on top of it.

I didn't know really anything about long term care before I looked into it, but having worked with the severely mentally ill in the past, I knew a lot about medical care, including the fact that they had to have NOTHING in order to get into long term care facilities. That is what started my hunt.

Do you recommend parents selling their houses to their kids early on so that this asset could not be touched? I am just thinking about how it is problematic if a person sells/gives money to their heirs less than 5 years before prior to their "spin down". At that was my understanding 10 years ago. Or something like that.

Lol, of course you've got it handled financially, I wasn't questioning that. I just want to make sure you're ready for the sudden course changes that can happen. My mom is very well off, I figured I could just staff her up at home with lawn guy, housekeeper, cook etc. Who knew a damn head gasket on the Buick could start a cascade of events that would lead to me moving her thirty days later??! It has actually turned out very well and she thanks me at least weekly for getting her into a place where she can make friends and feel safe. (Those little pull cords make her feel much better, and me too)

I'm really glad you got your mom one of the policies that pays a set amount to be used at will rather than just covering specific events, it should save you a ton of headaches. The 6 years should be plenty, just don't start it until you need to.

My mother doesn't have long term insurance per se, we just pay as we go. A number of years ago my father hit a point where he considered them to be self insured and he was right. She has SS+pension+2 large untouched annuities and a trust fund so we're good to go so that she can have the best of whatever she wants. I just manage the managers at this point (that sounds so easy now after a year of tearing my hair out to set it all up). It used to be that folks with assets would set it up so that the kids could be "evil" and strip them of assets through legal maneuvering and then just show up with "gifts". This was how my folks were set up for years but the IRS wised up about 15-20 years ago, the 5 year look back is now carefully scrutinized as I understand it.

On the house, I would ask an Estate attorney. She could gift it now but of course any amount over $14k would have gift tax applied, if there are any trusts involved it could be held inside of that to be protected from liability and just regarded as part of her portfolio. Unless the title changes names prior to her death there will be possible estate taxes involved if she leaves over X amount. Over my pay grade, you should look into it. The annual "tax free gift" of $14k per year is a great tool for folks it could apply to. My best bud's mother has been in a facility for years and is about to run out of money and get switched to Medicaid. His sister has been doing this for years; have their mother "gift" the money which was set aside in an account for if she should run out in the sisters name. You do have to have faith in the account holder to not just hijack the money though. Now when they need it they can use it for the extras not otherwise covered. I think this might be a way around the look back as well, check with someone qualified.

Right now I am mid-estate plan for myself and it looks like I will put my house into a trust, it makes life much easier for whoever gets it. When I knew I would have to sell my folks house I just cleaned out the possessions and handed the keys to the trust officer. They are required by law to get fair market value and do all the messing about with RE agents and such. I was so overwhelmed at that point I would have sold it for $10 just to be done with it, so the trust set up really helped.

On a side note: I posted some time ago an article about the cost involved in "the last five years" of the three primary ways people go, cancer, heart or dementia/AZ and the ranges given were $200-$300k for the five years. As I look at my mothers actual expenses now with fairly low needs I think those numbers are wrong, it must discount housing or something because she's about $50k per year after taxes now ($250k for 5yr) and it will only go up from there. The place where I have her is within a couple hundred bucks a month of the other places so it isn't much out of line with "average" independent living + six hours a week of personal care. By contrast, when my father was dying that last month when he was under hospice the SNF charged $10k for the one month room and board and that didn't include supplies or medical. I guess that's just to say the numbers used by planners might not pass the reality test.

******************************************

I know some of this doesn't look like what most would consider "caregiver stress" since it isn't the daily feeding, clothing, driving around part of it. I've done a share of that too, spoonfeeding my father who hated me and brushing his teeth when staff didn't show at the SNF, setting up my mother who didn't call me for 26 years because she was too timid to cross my father etc.. I think stress comes in different forms and everyone gets a unique set of challenges. I talk about having to do this all myself, but on the other hand I don't have to work around siblings that might have different ideas or other relatives trying to micromanage.

I really hope other folks will come by and give their take on what they are dealing with. Anyone who cares about anyone else be it partner, parent, or child is exactly one nasty accident or disease away from suddenly becoming a "caregiver" in some capacity.

Welp, mom got lots better with the second antibiotics and now this "thing" has taken up a new residence a bit lower. Her nurse took her to the surgeon for the follow up appt scheduled before and he did a core tissue sample on the spot. Now we're back in the wait for pathology bucket again. Nail bitin' time for another week.

It's the waiting that drives ya nuts...

I need to have this conversation with my parents. They are in their mid 70s and doing great, but anything can happen. We talked about it a bit about 5 years ago when we were tag teaming taking care of my grandmother through her end of life and made some light plans, but everything was so heavy and emotional at that time I'm not sure where they stand now. I am glad, for many reasons, that I had an active role caring for my grandmother during her decline. Stage IV breast cancer, alzheimers, sundowners syndrome. She kept us busy. One thing I learned was that I'm not going to be able to count on my brother to provide any actual help. Gratitude to you all who are spelling out the thoughts and options to be looking at for long term care and security.

Kelt, hoping you get results from the tissue sample very quickly and that the results are not worrisome...

It's good news, the cancer has not returned. The infection is a weird one and quite large, but we are treating it aggressively with antibiotics (which I hate but are sometimes what you have to do..), topical steroids, and probiotics that will continue for three weeks after the antibiotics so that we can help her system rebuild when this is hopefully past. Thank you for keeping in touch on this . :)

I wanted to come back in on this since I came across something new to me and I learn everyday how much all of this costs.

I was looking at a "Long term healthcare cost calculator" on the Lincoln Financial site since mom has an annuity there and I am sort of looking at whether or not I should do a long term policy or annuity for myself. It was interesting that instead of using the $200-$300k figures for 5 years used by financial planners, their tool uses $91,250k per year with anticipated inflation of 2.9% per year. That is just the default starting point, the calculator has sliders to change the basic variables to test different scenarios. I'm sure other companies have similar tools. Granted this is a type of company that sells large and complicated insurance products it would be in their interest to use higher numbers to sell bigger plans.

However, it seems like maybe they are closer to the truth, and maybe under still, to what I'm seeing with my friends and myself dealing with this.

Food for thought...

Pretty sure mom has "Sundowners" I'm learning about it. :(

She had her second middle-of-the-night stroll last night after being the only one who heard a fire alarm, same as last time. At least this time she grabbed her purse and didn't get locked out.

She also cancelled her driver to the dentist today because her primary nurse called her this morning to say he would take her. He's in El Salvador this week. :thinking:

I spoke with her back-up nurse who has lots of dementia experience and told her I thought mom was having "auditory hallucinations" and a couple of other things. She said she thought it was this sundowners condition. In reading through some of the symptoms, I'm glad she's only having the more benign ones for now.

My grandmother had sundowners syndrome and it was really rough as time went on. She "ran away" a lot at night and imagined a lot of horrible things were happening in her house and out in the world. Once she was in assisted living she had a security alarm on her wrist to alert staff if she tried to break out at night. I do know that, when it was first developing, we found she improved when she started getting injections of vitamin B12. The summer months also help as it really is impacted by darkness. Winters get rough with sundowners. I'm sorry this is being added to her care needs.

My mom has 24/7 HHA's and long-term insurance which covers about a fifth of the cost. The rest comes from savings. I have lung issues and arthritis. I cook and do the finances and arrange everything, take her to treatment, and so on. It really takes two to take care of her, and as I am an only child, the second person is someone we have to pay. If she goes into a facility, long term insurance will pay more, and with her income, I imagine she would be fine. It's not likely though. If she goes downhill (god forbid), it probably won't be long because she has a kind of cancer that when it grows, it grows fast. It's glioblastoma. What Beau Biden had.

She just got out of the hospital. Stroke, they think, but they are not sure. At least it wasn't tumor growth.

For the years we cared for my mother it was the worst stress I can ever remember going through, and I had help!

My spouse stepped up and changed her life to work from home...she was there doing all the bathing and wiping during the day while I went out to work, and I had the nights including all trips to dialysis. I had to take a lot of time off work to take her to doctor appointments, but fortunately in California my employer had to let me!

While we had a lot to handle, I really felt blessed to have had that time with mom. I will always be grateful that I had such a wonderful love to help get us through it.

My thoughts go out to all of you struggling to find ways to care for your loved ones. (f)