What happens when money for assisted living runs out?

[furrykidmom]

My mom is in Allegheny county, pittsburgh.

I just got off the phone with the department of aging. They said that they do offer a SS supplement for people who qualify financially. Right now her SSI is above the limit but the limit raises yearly. So by the time that her money is gone she may qualify. The supplement will almost cover that final one third. We will be responsible for a couple hundred dollars.

Any further information on available assistance would be appreciated.

Thanks for your offer of help

 

[DiverDiva]

<<Hugs>> from Minnesota! Is there a social services dept. or something like that for your county that might be able to advise you of more options to help pay for the care she needs? It sounds as though it is medically necessary.

 

[TossBranAbi]

Have you checked other assisted living facilities in the area? Not all are staffed by medically trained professionals but some are. I believe that all nursing homes/assisted living are not good but there are some better than others. I have worked in a nursing home for about 2 years during highschool as a CNA, something I never ever want to do again. You are right about there being too many patients to staff and people do not get as much attention as they should but I wouldn't say they are neglected. In the facility where I worked, each aide was responsible for 15 patients, there were two aides on a wing and one LPN for those 30 patients, then the supervisor was an RN who was responsible for every patient in the building. There were some aides who didn't give a crap about their work, they were just there for the money but a majority of us would take the time to give individual attention to each patient and it was us aides who usually noticed a problem with a patient and would let the LPN know, we were the ones who knew the patients and could recognize if something was "off" with that particular patient.
Our facility had 2 types or care, skilled and non-skilled. Most of the patients in the non-skilled side were able to do basic activities for themselves, they just needed a little guidance. Skilled was terrible, no one could do anything for themselves which was fine but there were the same number of aides to the same number of patients which meant more rushing around and less one on one time but everyone got what they needed. I hated working skilled because I hated to rush around like that, I wanted to take the time to talk to the patient and have time to listen to what they were saying. Some patients had family that would barely ever if ever come to visit them, that made it even harder on the skilled side, the non-skilled was a little easier because the aides had a few more minutes to spend with the patients. I guess what I am saying that it is so important for family to visit.

Would it be possible for you to place her in a non-skilled wing of a nursing home where the insurance will pay for her care but have family members stay with her during the day and just help out with her day to day care? The patients would get what they would need but sometimes they would have to wait a little longer to eat because there wasn't enough people to help feed everyone, or stuff like that. A few of the patients did have family members or friends that would come in during feeding times or bedtime or bathtime or what have you just to help out with their loved one, made the patient realize that the family did still care and it would give us more time to devote to patients who didn't have family members that cared enough to visit.

ANother thing, our patients who were covered by medicare were in a "designated" area and we were to take care of them last. As sad as it is, that is how we were to do our job. I know that doesn't help your situation but thought I would mention it so you could keep your eyes open for that kind of mistreatment in your search.
I loved my job because of what I did but hated to work for the nursing home. Fortunately for me, a patient came in that was in a car accident and I became real close to her, she wanted to go home (she actually was a nurse and ran her own rest home) but couldn't do it without help. I quit my job and went to help her out for a while until she got better. She doesn't have any residents anymore and has healed up pretty good. That was 4 years ago and to this day I still go visit her weekly. If I wouldn't have taken the time to talk to my patients and learn who they were, I would have never found this awesome friendship I have with her.

Wow, this turned into a book but thought it may help you in your decision. Maybe if you look for a smaller home or a rest home like my friend Peg had, that may be a better solution. Find somewhere that you feel comfortable with.
I know you said you aren't able to take care of her at your house, if it is because of a lack of equipment, you should be able to get that stuff. Medicare should pay for a bed, a lift when needed and any other things you would need plus a visiting nurse to come. Maybe also look into some respite programs to have someone come during the day to stay with her while you are at work or just need to get out. Not sure if you have the same programs down there in PGH but Helpmates is a prominent care agency that helps out with that type of thing.

*hugs*

 

[furrykidmom]

My nursing home comments were also based on personal experience. As a GN coming out of nursing school my first job was a nursing home on a skilled nursing unit. You are right. The work is hard and there is rarely time to get to know the patients. I am very social so this killed me. I do feel that this is neglect. I feel that companionship is a basic need of life. These people are alone. You are right. Many do not have visitors. It is sad.

I do not want my mom in a non-skilled nursing home. That is basically what she has now for rehab. The activities in this facility will not exercise my mom' mind. She has only lost her endurance. She needs a little help with her ADL's and assistance to the bathroom. She is afraid of falling. Otherwise, she is a social butterfly. She ran the Arts and crafts meetings every Monday at the Independent Living facility she is leaving. She still wants to do arts and crafts but refuses to take on the responsibility of running it again. It is more than she can handle now physically. But the place she is rehabing at has activities that are geared more towards a five year old.

I chose the assisted living facility that she is going to based on safety and social activities. Once you stop exercising the mind and body it quits. I want quality of life for her so I refuse to compromise based on cost. I know that I may be shortening my financial rope but I have to do what is best for the hear and now. I have said repeatedly If I had a crystal ball as to how long she will live I would know how to budget the money. She is my mom. I want her to outlive her money so long as it is a life worth living.

We do visit on almost a daily basis but we both work full time so we are lucky to stay an hour on workdays. Remember we have a home and family too so every waking hour and non-work time cannot be spent visiting. There are not enough hours in a day now.

I feel for families. I know how hard it is. My husband and I are basically it. My brother is trying to raise two boys that are trying to raise children of their own. Problem is they are children having children. So they all have time and financial problems. Parental care always seems to fall on the daughter and I am it.

We are still considering bringing her home. We are trying to work out the kinks. The biggest problems are that we live in a raised ranch. There are a minimum of 15 stair to get in and out of the house. The house is on a grade which makes a wheelchair ramp close to impossible. Also, our house is very small and manuveuring a wheelchair or a walker is difficult. Turning in the hallway to the bedrooms would be difficult. As is the entrance to the front door. When the door opens it touchs the wall behind it.

She is on oxygen 24/7 so she drags tubing around. We have two young Boxers and an elderly German Shepherd. They have also been neglected with this hospitalization. Thankfully, this is the only place that would not tell me to get rid of my dogs. However, this would be a circumstance where I could understand if someone did. I just can't. They are like my kids. My mom knows that and she would never be able to live with herself if we gave up our dogs.

There are so many fall risks just with the oxygen and the dogs. She already gets caught up in it. The dogs are going to stuble over it which has potential to now put it in her way or tug it so hard that it rips out of her nose. If one of the dogs gets caught up in it and panics they could knock her over. And my youngest may decide that it is a great chew toy. Just so many things to worry about having her here.

We are trying to figure out if we can convert the basement into her apartment and put in a stair lift to get her into the house when we are home. I really wish that we would have considered being in this situation in the future when we bought this house. However, it took us nine months to find our house and we thought by now we would have a big addition. Nothing ever goes as planned with home ownership, does it?

Wow, I am absolutely stunned by your statement about the Medicare patients. How sad is that? Our facility was not like that. But I do remember being so busy and not having time to chat. And the residents were still trying to talk to you as you were backing out the door. I felt so guilty and I remember saying that I hope that my life never leads me to that stage in life. I hated, hated, hated that job. I did the best I could but I never felt that it was enough. I had a thirty patient assignment also. I remember just finishing my eight am meds and it was time to do 10's. I was also expected to help bathe, dress, toilet and feed patients. I also had IV's, tube feeds and dressing changes. Health care for our seniors has to change. They deserve more respect than this. And I worked for one of the most well respected nursing homes in the community.

I have been told that home care will be out of pocket. I can get equipment but care is on my own unless she is in hospice. Right now she will have a visiting nurse for a few weeks but that is because she just got out of the hospital. Other things that bother me are that she occasionally has bladder/bowel accidents. I am a nurse but this is my mother. What a loss of dignity to have your daughter or son-in-law if I am not home to clean you up.

My mind is just boggled at the lack of assistance available. I can get a home health aide but that is at a price of ten dollars an hour. To some that may not sound like much but let me put it in perspective. We work ten hour days with one hour drive time for a total of twelve hours time lets say four days a week. Without any extra time for running late or family respite time that is $1920 a month out of our pocket. If I had that kind of money our dogs would have home care.

At this point, I am looking for information for financial assistance for when the money runs out so that she does not have to be placed in a cesspool. I am also looking for legal ways to spend down her money. That is the politically correct way of saying protect money from the government taking it. I know I can prepay her funeral. Her plot is already paid for except for the fee to open the site. I can also start to gift monies but have it returned to me when I need it. This of course means that it can only be gifted to people I can trust not to spend it on themselves or to just give it back to me to hold until she needs it. The lawyer wants me to gather all of her assets and he is going to look and see what we can protect. He said that the laws have changed and it is much more difficult to do. I also have to spend down to the required amount for her to qualify for aid and assistance from the VA. My father did three tours of duty so I think she is entitled to spousal benefits.

So far this is that is what I learned today. Thanks to all for being there for me today. I was such a basket case. I have come to terms and accepted the decisions that I have made so far and feel that I have done what is in my mother's best interest. I can sleep with the decisions that I have made. Just like your kids you want what is best for them. After all, they provided what was best for you.

Wow, talk about long!! Sorry but thanks again for listening, being there and supporting me. I love this board. Dog people are the most caring people in the world.

 

[Irinikm]

I feel for you, since my Dad suffered a stroke a few years back and also my grandfather...

Being in another country, i cannot offer any practical advice, but i hope you'll be able to do what is best for her and your family. I don't know how bad it is, but both my father and my grandfather showed great progress as months flew by. My Dad recovered fully and my grandpa (who the doctors had declared brain dead) was able to come home and communicate with us, it seems that there are a lot that doctors still haven't figured out about the brain and strokes.

I remember my Grandpa on life support, in a coma, and then slowly week after week he became better and better and stronger although his scans revealed that his brain had suffered axcessive damage due to the stroke bleeding... but his brain had activated areas that are normally dormant and had rerouted the basic communication and awareness functions to other parts of the brain whick were not affected.

The doctors were so puzzled, that when they eventually released him to go home, they sat around with his scans, and couldn't believe their own eyes.


You're admirable for all your efforts and don't give up, things can take unexpectewd turns for the best and can eventually work out.

Irene, Martin & Boulou

 

[furrykidmom]

Thank you. I needed to hear that today. I know that is so true because my mom suffered a stroke several years ago. We never thought she would recover but she did. She had a few cognitive defects but only family noticed them. They were very minimal and we are not certain that they had any relationship to the stroke.

At this point, she is unable to walk independent of a walker. This has her very upset and confused. She was not like this prior to the hospitalization and now she fears that her next hospitalization will leave her bedridden. She averages at least one hospitalization a year for the past four years.

She is moved into her assisted living facility. She goes to all meals but has not been to a single activity. The staff respects her right to privacy and will mention activities and ask her to go but are not allowed to force her. She has only been there two days. I know I need to give her time to acclimate and adjust.

Her PT and OT will start to come in tomorrow. They will work with her two to three days a week. She is determined to walk again independently and is working hard. Only time will tell and I need to take it day by day. I am just so scared for her being in a new place and all alone. None of her friends are there. My father passed away in 2003 and she misses him dearly. I can only hope that she recovers quickly and gets back to the life she once knew. I hope it is a realistic goal. I will continue to pray and lean on my support groups. Thank you all for being here.

 

[DiverDiva]

Can you have a trust fund set up with you as the executor? That is what my dad did before he died. You would need to see a lawyer with trust experise, but it is my understanding that is one of the purposes of setting up a trust.

 

[LeahR]

My g-ma currently lives with me and dh, she needs help/care but not 24/7 so all is well for now. But I have begun my research for when she does need 24/7 and have found many places that do an asset search, determine what her pay capabilies are minus medicare and charge that per month until such time that her assets run out. When the assets run out they then accept medicare only. Of course neither her or us as her family can use any assets during this period. Hopes this helps!

 

[FletchersMom]

Oh this is an ugly thing, I know first hand. My grandmother lived her later years in absolute fear of being "left in a home to die" so we all did everything in our power to keep her out of one. She got alzheimers (sp?) and began falling down almost monthly. She broke her hip twice in one year and nearly burned my aunts house down because she had in a state of confusion stoked a woodfire and left all the flutes and doors open. It got to a point where we had no choice but to put her in a nursing home becuase she was a danger to herself. Thankfully, she had absolutely no moments of lucidity left at that point and didn't realize that we had had to opt for that. She was 85 when we picked a home and it was one that was within 15 minutes of all of us so that with the exception of bedtime she was very rarely without one of her 7 children or 50+ grandkids and greatgrandkids. We loved the facility we chose for her. You hear so many horror stories about nursing homes these days and we were truly blessed to have found such a nice home with such wonderful caring people who cared so much for my grandmother. When she passed all the nurses on her unit wept openly, we were so touched. Anyway, the way things were set up in the state of Maine where we were, we had to use up all of my grandmothers lifesavings and assets and then medicaid kicked in and paid 75% of the cost, we the family were responsible for the remainder of the cost. That cost was split between the 7 children and ended up being a few hundred apiece each month. My grandmother was in the home for 4 years. My grandparents worked hard for all that they had in life and not that we were trying to cheat the system but we moved the land and house into my mothers name so that the state couldn't come after them for that and also about half of her monetary savings were put into trust before we began the application process. THe state of Maine went back three years, so as soon as my grandmother fell ill we did all of these things so I don't know how the law works in PA or if it is too late for that in your situation but it is a thought. Good luck and many prayers to you during this time as I understand just how difficult it is