Assisted living questions UPDATE

[Cindy B]

Well thats a First!!!!!!

:

There really is nothing that can be done. After a series of HomeCare attendants, I finally found one who is at least nice & understanding, a bit ditzy sometimes, makes more work for me than she should...BUT nice (that counts for 90%). She tries, But if Mama dont wanna do something, MAMA AINT GONNA DO IT!!!!!

A good home health aide is so important. We really really lucked out with my FIL and he remained with the same women for the entire time until he passed away. She was an amazing woman who did the most amazing amount of patience, compassion and persistance. She was extremely professional and knew a lot about health systems in general.

I still remember her saying goodbye to my FIL on a Friday, there was a lot of hugs, tears and kindness to him. He passed away on Sunday evening. She (The hha) never saw him alive again.

 

[TeresaNJ]

I know the assisted living facilities we deal with on a daily basis are very picky about the clients they accept. I'm a Case Manager for a NJ hospital, and I know that first off, the assisted living facilities only want private pay patients, and they need to be one assist, meaning the patient only needs minimal assitance from one staff member to get out of bed, into a wheelchair, etc. I can't tell you how many times a client from an assited living facility gets admitted to our hospital and then the assisted living refuses to take them back, of course, after most of the client's money is gone too. I tend to think they are a little more lenient in accepting clients back depending on how much money the client has left. Then we, the hospital, have to deal with getting the patient into an extended care living faciity if the family can't take the patient home. It's a nightmare, as the patient must have Medicaid to go to long term care, so they end up being stuck in the hospital while all the paperwork is being taken care of, and the hospital eats the cost for the extra days. I do feel for you, Mushy, for what you are going through.

 

[DISUNC]

A good home health aide is so important. We really really lucked out with my FIL and he remained with the same women for the entire time until he passed away. She was an amazing woman who did the most amazing amount of patience, compassion and persistance. She was extremely professional and knew a lot about health systems in general.

I still remember her saying goodbye to my FIL on a Friday, there was a lot of hugs, tears and kindness to him. He passed away on Sunday evening. She (The hha) never saw him alive again.

This one is the 4th one I tried out, the others just really had noooooo patience, called out sick last minute (and they arent cheap either) She just does silly things, like the other day washed Moms clothes with a Depends in the laudry, then threw it all in the dryer. Took me about a hour to unclog the dryer! She will make them lunch and use all the BIG plates to serve them, then when dinner is ready..I cant find any plates. I find myself.."straightening up" after she leaves all the time!

BUT she is patient & nice.

 

[Pixie Dust for Me!]

Mushy,

Go to this website: http://www.pamedicaid.pitt.edu/documents/spousefs2.pdf

It provides a pretty good explanation of how Medicaid works in Pennsylvania. The only thing is it is written from the perspective of the husband entering care and the wife living in the community so please remember to reverse all the she's for he's and all the wife for husband.

Your dad can keep his home (valued up to $500,000), Household goods and personal effects (e.g.furnishings, clothing, jewelry), One motor vehicle, his Individual Retirement Account, Specific retirement and burial accounts
and keeps 1/2 of all assets other assets.

Good luck. I feel so badly for you and your DH. If my mother ever deliberately did anything to my DH like yours did I assure you, you don't want to know what I would do to her, but it would start out with "that's it!"

Finally I want to share with you 2 pieces of advice I've gotten in my life that I really value. My great-grandmother told me when I was a young woman getting married (in front of DH I'll add) "you get what you tolerate." Whenever I've been in a bad situation (whether at work, with friends or with family), I've tried to remember her advice. My grandmother (opposite side of the family) told me to remember that you can pick your friends, but not your family...and sometimes when family is toxic, you just have to save yourself first! (Unfortunately for her, she had experience with this from her daughter who was a complete loon! Unfortunately, until she her Alzheimer's advanced so badly she always wondered what she had done "wrong" with her last born child. My Dad and my other Aunt reminded her that she always told that them sometimes, no matter how much you love someone, you can't fix them!)

I realize with your mother's health that your situation is a bit different, but I would encourage you to do what is right for you and your immediate family and your dad. And, as hard as it may be to do, you may need to stop being available for your mother and let her have her outbursts with someone else for a while. I guess what I'm saying is she may just have to "lie in the bed she made" for a while.

If I can help you to understand Medicaid further, please do let me know. Sending good thoughts your way!

 

[denisenh]

agnes brings up a good point.... I spent a lot of time with my GM. I was the one who took her to the Dr, grocery shopping, talked to her home health aid etc. Therefore I saw just how bad things were getting. She had a stroke the same day (actually I think it was the day after) my other GM died. I begged for help from my dads family and finally got my dad to agree to stay with her when she went home (I believe she was in the hospital for about 48 hrs). Turned out my dad only planned on staying one night. He, his brother, my cousins etc all said things like "she seems fine" etc. Well sure she seems fine if you only spend 5 min with her 4-5 times a yr. It was clear I had no help. It got to the point where I was afraid for her life. She almost set the apartment on fire on a couple of occasions, passed out from low blood sugar every other week or so etc. I finally convinced her to go itno assisted live, to only have family members tell her I was doing it to steal her money. I know that at least her sisters were saying it, and i believe my uncle and his 3 adult children were too. Well that makes me the dumbest crook on the books then. move her from an apartment that rented for $250 a month to a place that cost $2250 a month. Not to mention she would have probably died soon because she wasn't eating or taking her meds when left alone. Other than a few bonds that had my uncle and dad on them, all her CDs bank accoutns etc had me as the benificiary. If I wanted her money, wouldn't I have left her somewhere where she would have died sooner? Oh it swtill pisses me off to think about it.

Wow....sounds like my ex family.

I had to resort to placing my DGM in a nursing home for the last 6 weeks of her life. I just couldn't keep her safe anymore. She'd wind up on the floor and then be all giddy when the ambulance men arrived. God bless her. All the while I'd be having a near heart attack over the whole situation.
Anyway, no help from any other family including her own son/only child, my ex father (gag) all with in one miles drive.
In the end they incinuated that I killed her. Nice huh?

 

[denisenh]

MushyMushy

I have been all through this thread, I think. I skipped around some. It is so interesting to hear what different people have to say.

Anyway, you are doing fine. This situation is SO hard! I have been there, like so many others.

I was going to suggest that the AL staff call an ambulance company to move your mother if they can't. I can't believe that they would expect you to do it. Seems that that is working out for you all finally.

Your DH sounds like an angel....just like mine. He was so good when my grandmother lived with us. He cared for her when I worked. (And we had 2 little ones at home too.)

After she passed he saved me...he was so there for me. Really above and beyond. I will never forget how wonderful he was to me, for months!!

Hugs to all of you caring for the sick, injured or elderly. No one understands better than those of us who have walked the walk.

I am totally with you Mushy!

 

[barkley]

i just want to STRONGLY reccommend that while you may get some information from websites on medicaid-the only information regarding the particular programs offered in your parent's state should be gotten from either a current, professional eligibility practioner in the field IN YOUR PARENT'S STATE or an elder law attorney IN THAT STATE who SPECIALIZES in the field (it's not one you want to use a lawyer for who does'nt dedicate themselves to knowing). programs change constantly (we received new regulations on as often as a daily basis-and these could be impacted further by individual interpretations at a county level that a state overview would not reflect). it is one of the most complex and demanding public assistance programs written (and constantly re-written).

right now there are lots of changes coming down both on a federal level and in individual states. the fiscal year has recently ended and budgets are reflecting tremendous cuts. you need to get the most up to date and accurate information which may not yet be published on any public websites.

 

[MushyMushy]

Barkley, my husband realized this a couple of weeks ago. He started looking into all the laws and rules online and said what a mess it was and we'd have to get an attorney or financial advisor to figure it all out. Right now we're waiting for a few other possibilities before we have to think about Medicaid. There's a nursing home near us that is affordable -- it's pay out of pocket, and cheaper than the AL place she's in now. A bed won't open up until later this month, so we're trying to hold on until then. There's another place that has a bed open, but even that one will take time -- it's the one we'll need to get the financial advice on because it's way too expensive for any of us to pay out of pocket.

I'm sorry about the incident with your DH. Are you sure that she did it on purpose? It sounds like it. I would not do a bedpan for her because she can control it..

It sounds like a control issue. She wants things her way and to others, (your family and the AS staff) know that she can do more.

If it helps you any, my FIL would do control issues with toiletry issues. As hard as it is to say, if she wants to do this, (lose control on purpose) she needs to be in adult incontinence underwear. Maybe that type of change will be enough for her to get herself in a better state if you know what I mean. That was a tough day for my FIL when he went from that to this new type of "underwear". After that point, some of his nastiness went away but a different type of atitude came in.

I didn't mean to make it sound as if she peed on him on purpose! No, she just refuses to use the toilet, so she gets to the point where she's incontinent. If she'd use the toilet, she's only mildly incontinent, like with sneezes or coughs (*ahem* not that most of us mothers in their 40s can relate to that ).

And the whole incontinence underwear is a fight. I don't understand WHY she has to fight this of all things. She wants to wear adult diapers that attach on the sides. The AL staff wants her to wear the pull-up kind because it's easier for them (and they think it lends more dignity). I mean, come on.

Well thats a First!!!!!!

Mom is very combatant. The problem is with alszheimers, she is combatant about a issue...then 2 minutes later starts up the same issue again. (and again and again)
Dad just has to be watched verrrrrrry carefully!

Wait, so they BOTH have alzheimers? I can't even imagine.

If you don't mind my asking, how did you come to the decision to care for them yourself? Was you relationship good before this?

Mushy,

Go to this website: http://www.pamedicaid.pitt.edu/documents/spousefs2.pdf

If I can help you to understand Medicaid further, please do let me know. Sending good thoughts your way!

Thank you so much for the guidance and kind words!

 

[Pea-n-Me]

I'm sorry things haven't gotten better.

There's a nursing home near us that is affordable -- it's pay out of pocket, and cheaper than the AL place she's in now.

Just make sure that although this one's cheaper, the care is high quality.

How To Choose A Nursing Home Facility

When we looked at nsg homes for my aunt, the price ranges had a difference of $3000/month. Having worked in nsg homes all through high school and college, I could see why. For example, in one place you could smell urine throughout the facility. Why? Because all of the dirty laundry bins were overflowing; obviously, this place wasn't great in the housekeeping dept. However, it did have a good reputation so we went back twice thinking maybe they were having an off day but no, still the same. I also noticed some of the furniture in patient rooms was broken, surely someone with dementia would get hurt trying to work a drawer that was lopsided with sharp, broken edges. Etc. At the same place, I could also see that staff were very busy. I could even see they had that "frayed look" you get when you're overworked, as in, more to do than one person can handle. Not good. And yes, this was the cheapest one.

None of the others were like this.

We ultimately chose the place we thought was best. It was one of the more expensive ones. (But interestingly, they "came down" in their price because she was "self pay" [having Long Term Care Ins, fortunately], so it ultimatly was the same price as the one above). At any rate, my aunt had Alzheimer's and had become extremely debilitated. She took a turn for the worse and actually passed away last week. But as we kept a bedside vigil while she was dying, I marveled at how clean she was and the wonderful condition of her skin - signs of good nursing care. As we sat there, teams of two aides came in every few hours to change and reposition her and it was great to see them working in teams - for a few reasons.* For the past year and a half on visits I watched the staff and they were very good and caring, no frazzled looks on their faces because staffing levels were adequate. Not to say they weren't busy; just not frazzled - there's a difference (because I know it well myself). All the signs of a good facility were there.

* Why are teams good? For one thing, accountablity, ie "someone's watching". Second, it's easier with two, which makes it more likely it's going to actually be done and there is less likely to be an injury. And three, more pleasant. Less stress means better interaction with patients.

Good luck. If I can be of any help, feel free to PM.

 

[MushyMushy]

Thanks for the article!

Actually, the one that's outrageously expensive is the one we don't care for! My mother was in it 4 years ago for shorter term care when she went through a heart infection. She liked it, but the whole place reeked of urine and the decor was so dark and depressing. I think the reason it's so much more expensive is because it's got a lot more skilled care and a lock-down alzheimer's ward.

My sister did a drop-in at the cheaper place and she was impressed by it. It's in a much less desirable area of town, but my town isn't exactly know for having desirable areas anyway.

I'm not 100% sure why there's such a price discrepancy in the two places. Could it be that one takes insurance and the other doesn't? I know one has more skilled care than the other, but the other is still a nursing home.

I don't know. This is the part my sister is taking care of and I do trust her judgment. I'd let her pick out a home for me.

 

[Cindy B]

.



I didn't mean to make it sound as if she peed on him on purpose! No, she just refuses to use the toilet, so she gets to the point where she's incontinent. If she'd use the toilet, she's only mildly incontinent, like with sneezes or coughs (*ahem* not that most of us mothers in their 40s can relate to that ).

And the whole incontinence underwear is a fight. I don't understand WHY she has to fight this of all things. She wants to wear adult diapers that attach on the sides. The AL staff wants her to wear the pull-up kind because it's easier for them (and they think it lends more dignity). I mean, come on.




Thank you so much for the guidance and kind words!

I remember the fight with incontenence underwear. The AL staff wanted the pull up kind as well because it did give more dignity. FIL actually wore those at home as well before he went to AL and he managed them himself for a long time.

I think towards the end he used the side ones but only after he couldn't do it himself.

I'm sorry I misunderstood. I'm not sure what I thought, but I've seen bathroom power issues!

 

[Pixie Dust for Me!]

Mushy,

You know, the only trouble with message boards is that we can't hear the inflection that others use...and unfortunately, people can't hear our inflection either!

Don't worry about what we think. I think we all (though we may be strangers) really want to offer you and yours some support.

Take care of yourself. I don't think anyone here on this thread is going to flame anyone (least of all you who has her hands so full)!

 

[MEG&MINNIE]

I just want to say that my thoughts are with you and that you are not alone. I am going thru somewhat the same circumstances that you are with my father and just to let you know that there is alot of help out there in the community ,you just have to know how to access them. I enlisted the help of the veterns visiting nurses, protective service social workers,Elderly Law attorney, Assisted Living facility and now finally after a year ,a long term care facility.It was a very stressful year and sometimes I had to breakdown and cry (even at work once). I am the only child and my father is to say the least is...very stubborn and hard to get along with. I very much felt the burden for finding a way to keep him safe...never mind trying to please him. He fought me and most of the agencies most of the time.
If the AL is not the right placement for your mom then the next step is a Nursing Home.You have to be content with knowing that you have done all you can for her and stop feeling guilty about her placement. It will all work out for you in the end ! It is very overwhelming at times but enlist the expertise of others out there in the community and keep notes.
Another thing I might add is ....Is you mom or dad a Vetern ?....there is money available out there for Long Term Care costs , but it is not widely known or offered.Best of Luck...

 

[arminnie]

As someone who takes care of their own aging parents (they live with me), and have the same issues home...
I have nothing but lotsa for you.

I understand too. I telecommuted for a couple of years (2000 miles - back and forth every two weeks at my expense) when my mother was terminally ill. We had a wonderful home health care aid who came during the day so I could work.

Seven years ago I gave up my job and home in CA and moved in with my dad who was 80 at the time. He is now 87 - had a stroke a few months ago and a horrible urinary tract infection weeks later that has been worse than the stroke.

My dad has told doctors that I neglected him and wouldn't feed him. I have learned just to let it all roll off.

I take him with me when I go to New Orleans, and that's where we were when the stroke happened. The paralysis was temporary so if I had not been there to see it, I would have never known that it happened. He had surgery while we were there for a blocked carotid artery.

I've spent the past month looking at independent senior apartments (with meals and housekeeping), assisted living and nursing homes. The best advice I was given was to find a place that had all 3 components - much easier to up the care when needed.

Fortunately right now it looks like my dad is going to be able to stay here with me in the house. He just got released from home nursing care and PT today.

I wish you the best.

 

[MushyMushy]

Mushy,

You know, the only trouble with message boards is that we can't hear the inflection that others use...and unfortunately, people can't hear our inflection either!

Don't worry about what we think. I think we all (though we may be strangers) really want to offer you and yours some support.

Take care of yourself. I don't think anyone here on this thread is going to flame anyone (least of all you who has her hands so full)!

I think everyone's been wonderful on here. I was a bit worried to post it because I didn't think a lot of people would understand such a volatile relationship, but fortunately (and sadly) people have gone through it or have witnessed it first hand.

I'm really having a hard time with this. My mother set the tone of this relationship from the time she adopted me as an infant. There's never been affection or softness. That's not to say that she didn't love me in her own way, but her way was to hand over money or take care of things that way -- and you know, that's just not what a mother/daughter relationship should be. I love her, but I don't know how to be any other way with her, and I think I'll just have to live with that.

I just want to say that my thoughts are with you and that you are not alone. I am going thru somewhat the same circumstances that you are with my father and just to let you know that there is alot of help out there in the community ,you just have to know how to access them. I enlisted the help of the veterns visiting nurses, protective service social workers,Elderly Law attorney, Assisted Living facility and now finally after a year ,a long term care facility.It was a very stressful year and sometimes I had to breakdown and cry (even at work once). I am the only child and my father is to say the least is...very stubborn and hard to get along with. I very much felt the burden for finding a way to keep him safe...never mind trying to please him. He fought me and most of the agencies most of the time.
If the AL is not the right placement for your mom then the next step is a Nursing Home.You have to be content with knowing that you have done all you can for her and stop feeling guilty about her placement. It will all work out for you in the end ! It is very overwhelming at times but enlist the expertise of others out there in the community and keep notes.
Another thing I might add is ....Is you mom or dad a Vetern ?....there is money available out there for Long Term Care costs , but it is not widely known or offered.Best of Luck...

Good luck to you too -- sounds like you've really got your hands full as well, especially with a full-time job. Mine starts back up soon, but at least it's flexible for now (substitute teacher) so I can only work a day here and there if that's what I need to do.

Neither one of my parents are veterans. Though it wouldn't surprise me to find out that my mom was a drill sergeant in another life.

 

[Snowysmom]

I have just been reading through this thread. What a difficult situation you and your family are in. My father is in a nursing home as he can no longer care for himself at home after some major medical and surgical problems. Yesterday the nurse on the floor laughingly referred to him as an occasional "spitfire." He is usually very cooperative but there are some things that really make him mad and he will let them know it. He always wants to first in line to go in for a nap after lunch and he is quite vocal about it.

The one thing that I found extremely helpful was talking with an elder law attorney. That cost can be part of the spend down towards Medicaid coverage. She helped with all the rules and regulations, got the paperwork done, and followed through to the approval. It was money well spent and it came from my father's assets. Also, your dad will not have to spend all his money. There are rules about how much and what he can keep. They do not leave a spouse destitute.

I hope things work out well for you and your family. You don't want to risk the physical and mental well being of your family. It does sound like a nursing home is the best fit for her right now and she will get the care she needs. Good luck.

 

[MushyMushy]

I just wanted to update and let you know that we got somewhat of a reprieve! My mother got approved for a 20-day stay at the more expensive nursing home through her insurance and she's *supposed* to get some pretty intensive physical therapy there, but I'm not holding out much hope on that end because she'd have to put effort into it. That's not happening.

The next step is to wait for a bed to open up at the out of pocket rest home, and it looks like that'll happen soon.

Oh, and they'd quit calling us to go help so much too. There were a few people at the AL place who let the others know that it was unacceptable, so they started being firmer with her and getting her to cooperate better. I think she got scared into it too because she got a few bedsores from not letting them change her and from not wanting to move.

 

[Disney Doll]

Well, it sounds like things are moving in a direction that will be easier for everyone to handle.

That's good.

Meanwhile, are you taking care of you????

(Yes, you may roll your eyes and think "DisneyDoll is such a nag! )

 

[mamacatnv]

Thanks for the article!

Actually, the one that's outrageously expensive is the one we don't care for! My mother was in it 4 years ago for shorter term care when she went through a heart infection. She liked it, but the whole place reeked of urine and the decor was so dark and depressing. I think the reason it's so much more expensive is because it's got a lot more skilled care and a lock-down alzheimer's ward.

My sister did a drop-in at the cheaper place and she was impressed by it. It's in a much less desirable area of town, but my town isn't exactly know for having desirable areas anyway.

I'm not 100% sure why there's such a price discrepancy in the two places. Could it be that one takes insurance and the other doesn't? I know one has more skilled care than the other, but the other is still a nursing home.

I don't know. This is the part my sister is taking care of and I do trust her judgment. I'd let her pick out a home for me.

The first facility I put Mother into was gorgeous! It was brand new, state of the art, complete with lots of safe outdoor areas that she had access too, a small garden plot for the residents, a large room with full bath and the list goes on and on. However, when she had pneumonia, we didn't even know she was sick until they removed her via ambulance, even though both my brother and I had called that morning to check in as we do every few days. When I would call to check in, 9 times out of 10 I either got an aide who didn't speak spanish or I got the daily basics but never anything personal. "She slept from 9 to 8" "She has gained 4.2 lbs" "she was dry all night" etc. After the pneumonia episode I went on the hunt for something different.

Her current home is not new and it is not state of the art. It is old, her room is small and the bathroom facilities are at the end of the hall. Her outdoor space is very limited and it is not in the chic part of town. However, when I call for an update, they always know who I am talking about, they speak english and instead of daily basics they tell me things like "she went to the sing along today, she was smiling and knew a lot of the words" "she went on a walk with the PT aide to the park today, she knew what a bird and a pinecone were" "she sat and looked at those books you sent her" "today we are having her favorite dessert and she is excited" If I want to know about her sleeping and eating patterns I need to remember to ask. The staff is too busy keeping me informed on what made my Mother happy that day.

Don't let the "presentation" fool you. Continued thoughts and prayers for you and your family.

 

[ZipaDeeDooDah]

I just wanted to update and let you know that we got somewhat of a reprieve! My mother got approved for a 20-day stay at the more expensive nursing home through her insurance and she's *supposed* to get some pretty intensive physical therapy there, but I'm not holding out much hope on that end because she'd have to put effort into it. That's not happening.

The next step is to wait for a bed to open up at the out of pocket rest home, and it looks like that'll happen soon.

Oh, and they'd quit calling us to go help so much too. There were a few people at the AL place who let the others know that it was unacceptable, so they started being firmer with her and getting her to cooperate better. I think she got scared into it too because she got a few bedsores from not letting them change her and from not wanting to move.

I am so happy to hear that things are falling into place for your family.

I would really hope that there is also some kind of counseling available for your mother while she is there. Is there anything of the sort there for her?