Wendy already takes care of her mother in law at home. Mrs. N. (remember her?) lives at our assisted living. If Wendy could bring her mother home with her she would, but her health care is something she cannot take care of. She also works full-time. Mrs. N, however, makes $100 per month over the limit for Medicaid. Wow. That's just too much money, isn't it? She also, according to the nurse from the Department of Family Services, does not need nursing care. She functions too highly.
Wendy did everything right. She planned ahead. She knew exactly when her mom would run out of money and knew where to go to get her mom signed up for a Medicaid bed in a nursing home. She never factored in being disqualified - forever.
What was Plan B? There wasn't one. Wendy sat down in our office and sobbed. It was the only time I saw her just completely resigned and broken down. Who wouldn't be? I thought about her all weekend. How heart wrenching it must be to not know how you were going to take care of your mother - your mother.
Sometimes I go home and pray because there are elderly people who need taking care of, and I don't know how it's going to get done.
There is a happy ending for Wendy's mom - temporarily. She will go to a subsidized assisted living in Fairfax county that is workable for them pulling together family funds.
Thank God there is a solution - for now.

Mrs. N won't be with us much longer. Her daughter gave us the heads up just before Christmas about her mom's limited funds. This means one thing: a Medicaid bed in a nursing home. Mrs. N. is a lovely woman. She is our resident poet, writing poems about other residents who are especially kind and helpful to her. She has made an amazing recovery from her fall - the one that brought her to us. It was a long road from dependence on others in a wheelchair to walking independently on her walker to and from the dining room. She has a private room - 360 square feet with a kitchenette, a private bathroom with a walk-in shower, picture windows overlooking a wooded area, and all her own furnishings.

I suppose it's good that we have such things as Medicaid beds as a safety net. It's just that the system is so troubled and only serves individuals who have next to nothing in income - and we haven't begun to talk about the quality of life - or lack of - in a nursing home. Mrs. N will now have a shared room with a curtain between herself and her roommate. She'll have a hospital bed and a shared bathroom. She may or may not have a shower in the room. Regardless, she'll be told which day is her shower day and what time. She'll make virtually no decisions about her own daily care. She'll probably have her meals in her room because the dining room will offer no social experience on the level she wishes to have, resulting in a big loss off human contact compared to her assisted living community.

I felt a sense of grief and resignation, I guess, as her daughter was explaining her own sense of loss and grief. She wished she could open up a kind of senior care center in her own home as she currently cares for her mother-in-law. She wished she was qualified to care for her own mother's needs. She went on to say how outraged she felt that our government has poured money into failing financial institutions, while cutting funds to Medicare and Medicaid - to the seniors who took care of us and kept us safe, as she put it.

You could say her mom is lucky to qualify at all vs. disqualify for having too much income and not enough for assisted living, as many individuals find themselves in this situation. And while this is a hard situation to resolve, we cannot be satisfied with an environment with no life-giving qualities beyond a roof, a hospital bed, a curtain, and a tray of food. No one there, from the administrator on down, is working towards anything other than compliance and keeping out of trouble, i.e., not getting any deficiencies on their next visit from licensing. I'm talking about every nursing home. Not just the one she is going to. No one knows yet, which one she is going to.

I just hope she will still write her poetry.

Queston of the Day

I answer so many questions every day. They are usually the same questions. Sometimes I get some great questions that the average person does not ask. These are the fun questions where I get to go off autopilot and fly on manual, using all my skills.

This adult child was a step-son who was eager to learn the basics about how care was delivered in our dementia neighborhood. He was very thorough in his research. He was trying very hard to imagine how things worked. I am sure that is where his question came from - his imagination. And so, when he asked,
"Do you have cameras in the rooms?" I was surprised at first, but got it when he added, "Do you have someone watching to see if they have fallen on the floor?"

The subject of fall prevention is HUGE. There is even a Northern Virginia Fall Prevention Coalition. Assisted living and nursing home regulations require fall risk assessments on every resident. My visitor gets points for creativity, but here's why you don't want cameras. Staff need to be available to respond to resident needs and not watching monitors. I went on to tell him no one can prevent falls. You can only reduce the risk. Falls can happen with private duty nurses. Fall prevention is an interdisciplinary responsibility. If I am not active during the day, I will not sleep well at night. The same is true for many of our frail elders and those who are in various stages of dementia. Better sleep = decreased likelihood of me trying to get up by myself in a state of sleepy confusion. BUT if the resident does need care in the night as a rule, it's the job of the caregiver, to know her well enough, to anticipate her needs and check her quietly throughout the night.

I have worked with some amazing CNA's. One of my previous communities in particular, had a stellar team I was proud to lead. The night shift in particular was the busiest. No kidding. Many CNA's sign on for night shift thinking it's a breeze. It's quiet. No real work to do. If that is the case, work is going undone. Night shift should be busy.

I have to be careful not to lecture too much. I love it when I get to be the expert. Who doesn't. But seriously, there are good reasons not to have cameras.

It really was a great question. I let him know that.

An Education

I was in the education business today - my favorite. I think I eventually got through to this adult son that you don't have to go to a nursing home at some point. He assumed his mother would eventually become bed-ridden and of course, this means a nursing home.

Reasons why people mistakenly believe a nursing home is needed:
- you become bed-ridden *
- you need a wheel chair
- you have more advanced stages of dementia
- you are a "wanderer"
- you are dependent on others for your mobility
- you are incontinent and one of the above
- you assume this is the natural aging progression when care from others is necessary

It took me some doing to explain, but I think he got it. Sometimes I worry our community is a mini nursing home in disguise because we give care through end of life in a pretty, home-like atmosphere - which we really do have down. The name Assisted Living is misleading to alot of people. Many people assume "assisted" implies you have to be able to do some things for yourself that stops short of complete and full assistance, hence the assumption that a nursing home is the next step. I really do understand why people think this way. It's not like we help them out with our own terminology.

There are over 16,000 nursing homes in this country, exceeding the number of US McDonald's franchises by about 4,000. These really aren't good places for our frail elders to live. But there aren't good choices, either. I'm going to a meeting next Wednesday to talk about this. Bill Thomas describes himself as a "nursing home abolitionist". I am totally stealing this motto.

* You do not get old and end up bed-ridden in a nursing home unless you have bad care. No one should be left in a bed if they are not sick and yet dependent on others for their mobility.

The Dining Room is Now Closed

Be careful. If you don't leave the dining room when it closes, you might be headed for a dementia neighborhood. The dining room has certain hours. You just can't STAY there.

I tried not to bash the competition when R came in. His mom is at (that other community) where the family has been told that she has to move to their dementia neighborhood. She refused to leave the dining room at the end of the meal and made one too many scenes. He asked me if she had to leave the dining room at a certain time and there was only one answer - no. She could stay as long as she wanted to. I refrained from saying something like, "We don't do it like that here, " or something vaguely snide. I wanted to. He doesn't want mom to be taken to another floor for activities during the day, without access to her room - which is the way they do things there - in their dementia neighborhood. I refrained again from saying, "We don't do it like that here." I wanted to, but I didn't.

This just sounds like a case of someone else's rules not working for the resident and the resident loses. Administrators love to use words like, "outbursts", and "agitation", and "inappropriate". I don't know if these words were used, but I'll bet you one of the three were. Families don't know how to push back in ways that challenge the administrators to try other interventions.

Just be careful. I'm telling you - a few outbursts in the wrong place and you will wind up on the dementia floor.

Dementia 101, but first -

What I handled today:

- assured a demanding family member that the maintenance coordinator would come in on his day off and unlock the human resources office so she could have the two article of clothing that someone put in there for her sister - why anyone thought this was a good idea, I do not know and why this could not wait until Monday, I do not know. Why no one else had a key except an off-site person, I also do not know. I am just the sales and marketing person.

- cleaned up dog vomit in my office. As though we were the honorees of this offering, Koby, our house dog, decided to walk in, open his mouth, and throw up right at our feet, while I was talking with an adult son telling me about his dad's addiction to alcohol and potential difficult move to our community. Enter Koby. I'm talking a mountain of debris-laden mucousy vomit. I excused myself to do a quick clean-up as discreetly as I could considering it was at his feet. Of course, there were no gloves to be found in a community that uses hundreds of them every day, so I improvised with a vinyl trash bag and some paper towels. Then I took my seat at the table, trying to appear unrattled, and said, "You were saying?".

Today I met with two families who have the exact same circumstances - a spouse who is reluctant to let go. They don't know how common their situation is. I'ts not my job to connect them. I wish it was. M's dad is military mentality. He believes he should take care of his wife forever and if he doesn't it reflects poorly on him, yet he is suffering and wearing down. In his weak moments, he calls his daughter and says, "Ok, I'm ready," and off she goes, researching communities. Then mom, with vascular dementia, who mistakes nail polish for lip stick, who has enough going on to cry and say, "don't take me there," will sabotage all the work gone into getting dad some relief from his situation. He cannot withstand her tears. And so the situation remains unresolved, until a crisis occurs. I am not always convinced we should try to assist families in engineering a resolution. Sometimes I think there is a plan already in place that we should be more confident in and if we let go, we would actually enable that plan to take effect and therefore bring about the resolution. Sometimes I want to say this to our corporate types, but I know this is not the marketing plan they are looking for.

Later today I served coffee to M (another M) in my office while I had my soup. I like to get her coffee. She takes it black. She says she is "hardcore". Whatever is bothering her can be soothed with a cup of hardcore coffee. I won't see her as often after today. She is transitioning to the memory care neighborhood. It was inevitable. It's not the word finding, so much as mistaking the elevator for her bathroom. It is not the diagnosis of dementia that compels the neighborhood, it is the behaviors. Some people think it is a place for wanderers - or the opposite - "for when you can't walk anymore or do things for yourself". I want to give a big class in long term care 101 and dementia 101 or "What is your dementia IQ? There are so many misconceptions I can't begin to tell you. When I talk to people, I am listening for where they are in there knowledge level. There are low levels of knowledge and there are misconceptions. I LOVE rewiring people's misconceptions - for good.

What if We're Not the Answer?

I don't know what to do about T. He really isn't appropriate for the community, but it isn't my call. I can tell you there isn't a place for him. I don't know how to help a 92 year old woman who is a full-time care-giver to her alcoholic husband with mobility issues and her 67 year old son, also living with her, on hospice for cancer with mets to his brain. His care issues plus her husbands care issues are too much. Yes, we take care of people who have cancer and hospice can come to us and care for them in-house, but this is different.
T has had a long-time addiction to pain meds: Oxycontin and Vicodin. He is functionally independent. It is his special combination of disagreeable personality/poor judgment/forgetfulness that makes him too hard to live with. He hasn't been physically violent, but he has swept the dresser off with his arm in the middle of a tantrum.
He did come for the assessment at the community and was very intolerant and impatient. We are sure he will leave or "exit seek" as we say in the biz if he is too "agitated" as they also say. The family has stated he has been addicted for two years now, and had "alcohol issues" prior to that. He will not be able to self-medicate at the community. Who knows what behaviors might surface if he can't have his meds when HE wants them. Having an angry, drug addict in withdrawal around frail seniors is not a good combination. Having him at his own mother's home is also not a good situation. I don't know what the solution is.
Sadly, the best situation is for the cancer to progress to where he is more dependent and more accepting of assistance.
I can't stop thinking about this family because I know this 92 year old caregiver who had to quit her tap dancing class ( but still takes tai chi and goes to church - yay) is sandwiched between two tyrants - her husband and her son. I have one of each, too. I can't imagine this situation. She can.