I just attended a caregiver's conference. I still get a perverse pleasure from being the youngest spousal caregiver there. When I check out the vendors, I am doing research on LTC and adding an additional caregiver to the mix, and there is shock about my age, my wife's age and my son's age. One half of the LTC facilities were limited to those 62 and older. One looked promising in that it hosted a FTP and EOD caregivers' support group.

paul, when DH needed to go to LTC in 2008 only 1 would accept him; the others said he was too young at 58 and that they had a minimum age limit of 62. I found that strange but they insisted they could not admit him. What I think compounded the problem was his history of aggression and no one wanted a relatively young, physically healthy man with a history of aggression.

I read an article several years ago about younger people having a hard time finding ALF and NH. The story was about younger gun shot victims, stroke victims, car/motorcycle accident victims. It was a problem all across the US. Most places are not set up for younger people.

So many things are set up cookie cutter style, and if you find you are not the right fit, where do you go.....

I just finished writing up my notes on Diana Walsh and they are below. I am going to give a copy of the book to my son, it might help him talk with his mother. It might be good for friends and relatives who have no idea what to say to your spouse. Hopefully I can write up my notes on Hank Dunn's talk on some end of life issues (feeding tubes, CPU, hydration, hospice).

On Veterans Day Diana Waugh spoke at a caregivers conference. She is an entertaining speaker, to say the least. She is very concerned over the welfare of people with dementia and their families.

In the morning session she addressed the families of people with dementia and the lack of support for them. Her talk covered much of her book "I Was Thinking: Unlocking the Door to Successful Converstaions with Loved Ones with Cognitive Loss"

The talk felt Alzheimer's oriented in that she equated cognitive losse with short-term memory loss and decision making. But much of what she said still fit families caring for people with FTD even though we deal more with behavioral issues than memory issues. She also talks in terms of parents and elderly having dementia, but that is the norm. The advice is not age specific.

Diana admits to making avery possible mistake with her mother, who suffered from dementia. None of her advice will work all of the time. She is trying to improve the number of positive interactions we have with our LO, a 25% improvement she considers a success.

He first advice is to let go your expectations of them. Everything else flows from this rule, but it isn't as simple as it sounds. "We need to stop looking at them as we always have. We need to change our expectations so we aren't constantly furstrated and saddened by their lost abilities. When we change our expectations, we can find them as they are." When we expect them to be as they were before we end up adding to their confusion and anxiety. The relationship will be different but also fulfilling.

If someone has short term memory loss, don't ask short term questions such as "what did you eat?", "How are You?", "What did you do yesterday?" They don't remember, asking them these questions will just frustrate them and make them feel inadequate. Feel free to shoot a nurse at a LTC facility if they ask your LO "what is my name?" If your LO has memory problems no need to humiliate them. Who likes having to take test every day.

When you come across something that they don't remember or didn't do, change the subject to something related, something your LO enjoys talking about.

Discussing the past is good, especially if you can get your LO telling stories that they enjoy telling. But don't ask if they remember "such and such," bring up the subject in a way that if they don't remember. The point of a disucssion is not a product but the process.

If you were to make a list for words to never use when talking with your LO, at the op are "No" and "Do you remember?". We don't want to ask them to do more than they can do.

So when your LO asks to speak to their mother, who died years ago, rather than remind them that their mother is dead, ask "what did you love most about your mother." Or if they want to go home, and are already home ask "What is the neatest thing about your home?"

So encourage remininencing, though you may have to promt.

Prepare ahead of time. Write down what you want to talk about.

Her afternoon talk covered more about long term care. If you have to place you LO make sure that the place knows about him or her. Interests, jobs, family history so people there are prepared to talk with them.

One of Diana's crusades is the removal of chemical and physical restraints. She tells a story of a nursing home where the head of nursing couldn't attend her talk because of a troublesome patient. The head said it took 5 people to restrain this one man from getting up (it still isn't clear why they didn't want him to get up). Diana asked to see this man and expected someone who was 7'2" and 400 pounds, the man was about 5 ft and 98 pounds. She was warned not to touch him, that he would hit her. She asked what he did for a living, at first she was given wrong information but told at the last minute that he worked as a truck driver. So she sat next to him and said that she always wondered how they manage to manuever huge trucks i alleys. He didn't answer but he did talk about driving. She then said that she had to go but thanked him for talking with her. He turned and shook her hand and thanked her for talking with him. it was a small thing but something that nursing home couldn't manage or imagine.

But having managed LTC herself she said that the facilities often don't have basic information about their residents that is important in making their lives better.

For more information and for ordering her book visit http://www.waughconsulting.info

I found my notes from Diana Waugh's afternoon session. It covers different subjects and is more oriented towards dementia sufferers in ALF and NH.

Whose problem is it? Ours. We need to figure out what our LOs want and how to achieve it.

We are purpose driven. People want to contribute, so we need to find work that the people we know with dementia can do. Often they receive help but are not given opportunities to provide help. Since L is showing more interest in meal planning, she just subscribed to Southern Living for the recipies, I will let her do as much as she wants. Sometimes she can help her paid caregiver with cooking, other times she can't. I want have her try to cook a meal by herself, this would be unsafe and also likely to result in failure.

One of Diana's goals is the elimination of restraints and alarms in NHs. She finds that much of the behavior of people with dementia is motivated by us, when we fight with them they fight back.

Loneliness is a problem. People often don't given NH information about their LOs, and there is a problem of people in NH using the information they are given. Are you a resident in a NH and want attention, best thing to do is to fall down.

Pain is a large issue. PRN pain medication should be avoided, because by the time someone with dementia indicates that they are in pain (and some can't do that) the pain is too great. To ensure that pain is kept to a minimum you should ask for Routine Pain Coverage and Breakthrough Coverage.

For cognitive testing Diana is down on the MMSE. The MMSE was developed for assessing cognitive function for people with mental illness. It is supposed to help guide doctors as to whether behavior is from the illness or from cognitive functions, it was never inteneded for use in dementia. She feels that the Allen cognitive levels used by Occupational Therapists is very useful but not widely used. She seem exasperated that a much better test is out there but ignored by most of the medical community.

She noted that bad behavior from residents in LTC often happens after family visits. Family members don't know how to talk with them and riles them up. Improved techniques described in her book and the morning session should help.

Showering. She asked how many people died of terminal dirtiness? Most of the bad smell is from hair and crotch. So think of dry shampoos if they don't like showers or baths.

People with dementia might not like going into bathrooms if they are cold. She recommends use of warm towels. To have a supply of warm towels put them in the dryer, and when you take them out do not fold them, and put them in a garbage bag. They will stay warmer for longer.

Linda, I have heard your story about Lloyds stay in the hospital, yet it is still shocking to me. As bad as Lynn was in the hospital in days gone by he was never restrained in any way. They did have to have a security guard in his room, but that was for his protection and mine. I wouldn't think it was even legal to do what they did to your husband, heartbreaking!!

Paul, thank you for sharing this information with us. Again I am shocked to read there is still an issue with restraints. It is against the law here. In Lynn's nursing home no restraints may be used. I even had to sign a legal waiver to allow him to have upper bedrails used! They are also strongly against over medicating and try to quickly get their residents on lower doses of all medicines. When Lynn was admitted the geriatric neuro-psychiatrist visited with him a couple times a week until he transitioned. The main goal was always how they could make his mind content without medicating.

I do however think getting rid of the alarms in nursing homes is a bad idea. Even the good places are understaffed to the point that without the alarms a resident could go without needed help for too long.

We call it adjusting or accepting here, but yes a valid point that until you stop expecting them to be who they were our lives will be full of turmoil and heartaches. Only when I went to join Lynn in his world did I find inner peace. To see him smile, to bring him joy, that is my only goal now.

My best advice would be no matter how wonderful or horrible the facility, the absolute best thing we can do for our loved ones is to be a fierce advocate for them and visit often. To me the most important thing they need now is to feel a kind human touch, hear words of love and happiness, and to be drawn out of their little world with daily stimulation. Time and time again I have seen what happens to the abandoned and it still breaks my heart.

paulc, if they could see past their noses, they would see how frustrated he becomes. For the most part, I avoid contact as much as possible with ignorant people. It's a little more difficult when they are family. Although thankfully (did I say that?) they don't come around very often. And I miss them so.....NOT!

I agree 100% with you Paul, alarms are a poor substitute for not having enough staff. But, even the very best facility can not have enough staff to watch every resident every moment. When Lynn lost the ability to walk he wore an alarm on his chair, if he tried to get up the alarm would ring. He couldn’t walk, he just didn’t remember he couldn’t! The alarm saved him from falling, broken hips or worse. It has been my experience that they serve a much needed protective and preventative service.