affordable quality care or our loved one

LizG55

Hi everyone,

I've been reading some of the posts on people not able to afford assisted living facilities for example without leaving themselves indigent and not being able to keep their home. Not only that, it's expensive to live today, period. There needs to be MAJOR and I do mean MAJOR changes in the health care system so when one person needs inpatient care, the other doesn't have to lose most everything, possibly not able to survive for various reasons and deal with such terrible despair.  This is a crisis situation! The US is supposed to be a rich country but  here at home we need our government for all the years I am alive to focus on this most serious of problems.. Me personally, I dread getting out of bed every day to caregive and try to keep up with keeping up. I'll probably drop dead first which at this point might be a blessing for me..For various reasons I can't have people come into the home to help so there you go.. ..  

Tfreedz

Liz,

I totally agree with you!! Unless you are extremely wealthy or have thought ahead to get long term care insurance affordable solutions are far and few in between. I feel fortunate that my Mom has some savings and her home but she is only 70, that money will be gone very quickly in memory care! I’m wondering what my husband and I should do ahead of time so that our children are not in the position we are with my Mom. Hope you can find a solution that works out for you without losing your home.

Unknown By Man

It is a crisis situation simply due to the fact that as our life expectancy goes up the chances of developing A/D goes up. Things like long term insurance are not the magic bullet they once were at the very least here in NY where I live. We have no whole life long term care insurance the most it goes up to is 7 to 10 years and if you outlive that time frame when you start to use it you will not be able to reapply after that time frame. 

The system around private pay commitment to just get the chance to put on the medicaid bed list is also a joke. Which is what some private pay facilities do. The entire system is flawed, this is why at the very least they pass death with dignity laws so at the very least I can leave wishes while of sound mind to go into effect if I lose capacity. 

In truth our entire health care system and support systems around A/D needs to alter perception it should be quality of life not quantity of life. Though that gets into difficult ethical questions. I mean often I am asked if my mom was of sound mind would she want me to suffer? I would say no, though my question in my head always comes up as if my mother was of sound mind and knew that with A/D her life will only get worse that in truth we have no light at the end of the tunnel. The prognosis is bleak yet we hold on to hope of a cure but I do wonder how many diseases have we developed cures that reverse the damage done? 

We are working to to prolong their lives which is great but at the very least we could make it so the lives they are living have some meaning, comfort, and enjoyment not the expense of others.

King Boo

The CSRA ( Community Spouse Resource Allowance) has nuances by state, so it is best to consult with a Certified Elder Law Attorney (www.nelf.org) about your individual situation, but generally, the spouse is permitted to keep their house and a certain amount of assets ( up to $137,000 for themselves), so they are not left destitute.

Iris L.

Yes, our life expectancy is going up.  Due to medical advances and good care, ill people are living longer, thus necessitating long term care.  Long term care insurance was originally supposed to be for a small number of people and only for a short time about up to three years.  People with dementia and other chronic illnesses can live longer than three years in a care facility.

Iris

Unknown By Man

Hey my moms name is Iris have not ran into many I can count them on one hand. 

Advancements are a double edge sword when the means to care do not match the growth of increase life expectancy. Also does not help when insurance companies mare someone for having chronic conditions especially ones for outside their control. Sorry cannot cover you cause you were unfortunate, better luck in your next life. 

LizG55

Hi Tfreedz,

Thank you for replying to my post and your kind words.. It depends as far s thinking head. Maybe some people can downsize and put some money away or if young enough long term care insurance but read the fine print on that and ask a lot of questions.  Elder Care Attorney. I go for the getting a smaller place to cur down on bills. It's a horrible situation to be in.. and should not be. The VA has tightened up on benefits also you have to have as lot less money they they used to require according to my information.  So we can't get help from them either at this time and my husband was on enemy lines in Korea.  But life is not just about what you bring in which would go to the ALF but what it cost to live.  To buy food, pay your bills.. it's totally insane... so stuck.. I'm sorry I can't help you with ideas I'm still searching myself. 

LizG55

Hi Unknown By Man,

I was reading your posts over the holiday which led to my writing mine, I felt for you all the way while I was taking in what you're dealing with, I used to live in NY, and yes, the long term health care has it's downside for sure... just wrote to someone else to read the fine print.

It seems our lives become valueless, but the person who is suffering and essentially dying is kept alive to linger and wipe us out unless we live in a Death With Dignity State. But even with that,  there can be a long time of suffering and need of care beforehand to wipe you out anyway. Back in the day family took care of their loved ones before Assisted Living profit came into the big time arena,  I don't just mean one family member the the whole family back in my grandparents day I'd say. I think in those states too, the patient has to be able to take the medications themselves that end their life you cannot give it to them. So with Alzheimer's  that could be a problem too . I don't live in a state with the Death With Dignity law but my husband is not near that point since his meds got straightened out, but he needs nursing care which I currently give.  

Yes, the system is flawed to say the least. Agree too about the quality of life not the quantity of life.  I'm trying to prepare myself for the inevitable, part of which is giving up my pets. That my life  is also over in a way,  and just praying my pets get a good home. The whole thing is sickening. 

LizG55

Hi Iris,

Oh yes, my mother had to go into an ALF though not for dementia, other problems and outlived my father by 11 years.. so it can last.....but they had money, she also got VA benefits, those laws have changed now and here we are.

sandwichone123

Death with Dignity doesn't generally apply to dementias. By the time they are considered terminal, they are not considered competent to choose.

Unknown By Man

To be fair, that should change since we all know dementia is a terminal disease from the get go. They are going to get worse, but the reality is from what I have seen from many healthcare professionals and even many on the alz hotline many seem to fool themselves into the hope that they advancements in medicine will cure them. Though generally we have rarely ever found cures that reverse the damage already done. 

Though I get it gets murky but personally as the sole person responsible if it gets the point where they are unable to take care of their loved one, terminating the patient should be a viable option. Especially, if they have no means no afford proper care, I understand this opens up Pandora’s box because it is ripe for abuse, or at the very least if someone with A/D is open about suicide maybe we should be open to the idea and dig deep as to what fears they have. They may be valid reasons to end their own life. 

In the end though I know for a fact if I ever get A/D I am going to kill myself. I will not put my family through this living hell cause I am afraid of dying. No one should have to see their loved one wilt away into nothingness. That should be something healthcare professionals consider when it comes to treatment, how will the loved ones take the progression of the disease. 

In my view I am not a parent not sure if I ever will be, but the true action of a parent would be to either make sure their loved ones are not burdened by them or they take the steps whatever that may be to not be a burden in any shape or form for their loved ones. If that means taking my own life so my loved ones can live life without having to worry about me. As mentioned in other posts my old man had the right idea about living verse just merely existing. 

LizG55

@Sandwichone

Yes I know I believe I wrote that perhaps in one of my replies. 

LizG55

Unknown By Man,

You deserve a thought out reply. I'm going to sleep now and have to make a trip tomorrow... so might take me a bit to get back to you, but I do want to answer this. Very important discussion. 

Unknown By Man

No worries take your time and hopefully it is an enjoyable trip.

Sleepless in Sleep

I am sure almost everyone on this forum would like to have 'all-this' covered by the 'system'. I guess Medicaid does exist at some point/level. A provided for end-of-life care for all is impossible.

I wish there were currently better options for LTC insurance (these companies are suffering too), but anyone is probably better off adding that onto one's retirement/investment plans.

Anyway, I agree with 'Unknown,' if I get this, and there are not serious improvements in intervention; see ya'll later.

Early on my LO had said similar, and at the time I didn't understand the thought (I do now), but then they forgot. I won't wait for that.

Iris L.

LizG55 wrote:

Hi 

  I'm trying to prepare myself for the inevitable, part of which is giving up my pets. That my life  is also over in a way,  and just praying my pets get a good home. 

What do you mean by this, Liz?  Why do you have to give up your pets?

Iris

LizG55

Hi Unknown by Man,

Not really enjoyable but another job that had to get taken care of. So tired I could fall over but thought I would write you back since I'm  still up remarkably!

Do people really believe these pharms will reverse damage? At the max the most they might help is with some symptoms and slow down the process a bit. My dad was tortured to death from the docs playing with his meds. My husband we try to keep it simple. Have learned that his brain is too fragile for change.  The only help and I might get tarred and feathered but this is my life experience is that supplements that replace some of the chemicals that the brain has lost can really buy time. I've seen it with my husband and I am very into this since it bought me 25 years I never would have had with my own health, But as far as conventional meds not a fan

.Your points that I agree with hit me hard because I am his caregiver and I have health issues of my own that are breaking down due to all this caregiving, I know there is help  when on Hospice but in my case, they can't be here 24/7 at this time and he is getting to the point I worry that in a couple of months I won't be able to care for him, That would mean I would have to put him in assisted living which of course upsets me on many levels but speaking of finances so what happens to me? I have some plans in place from thinking ahead but they are not the greatest.  So in a society such as ours, when there is no more quality of life and yet you drain dry the functioning caregiver financially what sense does this make? It's really insane if you ask me.. yet.... it makes a lot of money for those that can afford assisted living. Morally, it's a touchy subject because for some it becomes a religious issue, but all in all this should be a medical issue, ;period. We put pets to sleep so they don't suffer but people should suffer? Then with that, take down those caring for the patient as you say,  Not a health care system at all.. 

As far as the killing yourself part goes if you got AD and were able to think through that process I don't really want to get into that in an open forum it might cause a lot of distress to others,  But I will message you if you want to talk about it., or you can message me. 

Agreed, no one should have to watch their loved one wither away, deteriorating and losing themselves. My dad died 15 years ago and it still haunts me.. always will.. Now I get to watch my husband. It's inhumane to everyone. I also agree there needs to be some major changes with how doctors handle these deteriorating illnesses. We let people linger on with all kinds of horrible diseases to suffer unmercifully  why? and take their life saving to boot. The whole thing is very upsetting, We're dealing with many issues here and the caregiver is not taken into account... the  extreme desperation that he/she might be put into because of such circumstances. 

LizG55

Sleepless in Sleep'

But it doesn't really work that way. I also have a friend with dementia... he sundowns badly as well. Says to me when he gets bad will just run away..... he's already in trouble and doesn't want to face it or more likely realize it... is a very insidious illness and hit you before you know it.... 

LizG55

Hi Iris...

If I can't afford to keep them anymore ... need to leave home... that sort of thing,  Vets are very expensive. I have one up there now.. spent $1500 this month on vet care... freaking out a bit from that but love them... they're my kids.. I keep thinking of that movie Sofies Choice where she had to give up one of her children. If I can't afford them then I have no choice but I'm hoping it doesn't come down to that. Because for me if I have to give up my pets there's really nothing left... so always trying to figure out how to stay alive financially speaking,  

Unknown By Man

Unfortunately yes I have ran into many especially through the alz hotline, and my mother's doctors are telling us to hold on to hope for future advancements and when I question where their optimism comes from. I get it is depressing to think that legitimately not much can be done maybe draining hope instead of one's finances would be a far less indeal of a situation. 

I have been reaching out to many places even looked into the dementia village program. The Unfortunately reality is quality care costs money and while the disease does not discriminate Unfortunately care does just the nature of the world we live in. That is why I have my stance regarding taking ones life though yes I can see how it can create issues on an open forum. You are free to reach out privately. 

This is a topic we talk about open in my caregivers on the spectrum discord server. It can be depressing especially when we hear stories of how well people do in some of these more cutting edge facilities and or when people are in Situations that are able to devote the nesscary resources and have support from others to help. It is inspiring but also rage inducing that such things are not more common due to the cost associated. 

Also the lack of respect caregivers get is insane I cannot tell you how many times people have told you why not get paid to take care of your mom? You mean give up my well paying job to take on a 24/7 job that has no benefits and does not pay a liveable wage. I laughed when I often pay upwards of 35 and hour for an HHA yet through the get paid to take care of a loved one the rate is 15. I get the 35 is split between the HHA and agency among other costs associated with running such an agency. 

Though Please feel free to privately message me anytime.

LizG55

Hi Unknown by Man,

I have you as a connection but couldn't figure out how to Private message you so if you want, send me a PM hello and then I can answer you. Must be brain drain on my end  I don't know.

I'm upset about the same things are you are. Everyone that knows me says to me "you mean you can't afford ____ a month at least?" or "just put him in assisted living"  Hello????, do people realize before you know it you have nothing". To tell you the truth I wish I could afford not just for myself but for him a nice place where he could be taken care of in comfort and dignity..  But the reality of the moment is  taking care of him until I drop or he is so out of control I have no choice but to find a less expensive place for him. I will eventually however, run out of money as you have expressed the cost of an ALF is steep and add on medications, and extras besides just the room and board. So I figure, as the money deteriorates, I'll have to give up my pets and you can figure out the rest from there.

It's a disgrace. We  worked hard all our lives, lead good lives at one time and lived nicely. .. just to end up with our dignity, and our very lives threated because we live in a society that is based on money an profit rather than quality of life and the care of the survivors of the ill person.  The VA as well has really tightened up since when my parents were in assisted living. My mom and dad got benefits and they had way more money then we could ever hope to have, now you have to be quite indigent.   

The VA will pay to care for a spouse but I have not applied for that yet, because if he doesn't quality for help for himself then  why would I. I can ask but I don't think it would matter

I'm not familiar with the dementia village program but from what you said doesn't sound like an option of interest. You certainly do your homework no question about it, but as you say, it's the world we live in today and what the priorities are. 

Yes, with the agency help I believe the caregiver gets approx, half of what you pay them.

I'm, still trying to figure out if there is a way for me to survive this nightmare and live a life that might bring me some peace.. Maybe it's time to go off the grid once he has to go into an ALF, live a very simple life nothing like I expected and be closer to nature. I'll expand more on that if you can figure out how to message me. I sometimes think that maybe getting away from "suburbia" might be something to explore.. I was thinking before, I can't afford to stay here and pay for this and that... so I keep thinking of options for me to possibly take. Your situation is somewhat different, but the problem remains,. 

King Boo

The community spouse has some protection from destitution; they are allowed to keep their house and some money (126,000 ish) while their husband or wife requires Medicaid to fund their long term care (in most states, generally a skilled nursing facility).

Some states have Medicaid for Assisted Living and Memory Care, but not many and there are state specific regulations (and often long wait lists).  

A Certified Elder Law Attorney (www.nelf.org) can assist.

abc123

ttt

LizG55

King Boo wrote:

The community spouse has some protection from destitution; they are allowed to keep their house and some money (126,000 ish) while their husband or wife requires Medicaid to fund their long term care (in most states, generally a skilled nursing facility).

Some states have Medicaid for Assisted Living and Memory Care, but not many and there are state specific regulations (and often long wait lists).  

A Certified Elder Law Attorney (www.nelf.org) can assist.

True... but these days to keep a modest home you've had that's not going to last very long.. My state doesn't have Hospice facilities, but the ALF's do have memory care if you can afford. 

AlyJo

I read all the posts.  I am in the same boat.  My existence is to take care of my husband.  I truly believe he will out live me because the stress is causing me physical problems.  That all said and true......what can we do about it?  I don't see any hope nor do I see an end to the situation I (all of us) am in.   Quality is more important than quantity.  

Each day I try to find a reason to get out of bed.   I just gave up a job of 30 yrs that I love to stay home and take care of my husband.  He does not appreciate or understand what I have given up for him, nor does he care.  That is probably part of the whole disease.

I could keep complaining but that will not change anything.  

I don't want anyone to give up their life goals (wants and needs) to take care of me when I don't even understand what is going on.