Choosing Great Care Facilities 3/15/01

Chat Transcript "Choosing Great Care Facilities" with guest hosts Marilyn Rantz and Lori Popejoy, from the University of Missouri-Columbia Sinclair School of Nursing and authors of "The New Nursing Homes: A 20-Minute Way to Find Great Long-Term Care." Thursday, March 15, 2001 9:00PM to 11:00PM EST.

For more about Marilyn Rantz and Lori Popejoy, visit their website at http://www.nursinghomebook.com or purchase the book from Amazon.com.

[MarilynRantz.] Rich this is Lori Popejoy. I am standing in for Marilyn Rantz. I am the second author on the book and deal with clinical issues.

RichOBoyle> Ok Lori .. I will add your name to the pop-up page about this chat session.

RichOBoyle> Thelma... we can get started here if you have any nursing home questions

[MarilynRantz.] Yes

RichOBoyle> ok, here is an advance question:

RichOBoyle> my mother living with me, age 83, some form of dementia, also having children aged 7 and 11. What is the best determining factor (if there is) to know when she should be moved into a nursing home?

RichOBoyle> Lori, you may want to take it piece by piece

[MarilynRantz.] This is a potentially tough situation. The caregiver will have many stresses from multiple sources. The most important questions would be how the family dynamic is affected.

[MarilynRantz.] When the family can't function well any longer. There is increased fighting, or tension then it may be time to consider nursing home placement. Also if your mother can't tolerate stimulation living with children can be difficult.

[MarilynRantz.] The most important issue is to look at the quality of life and health of all family members.

[MarilynRantz.] Where is she in the dementia process? Who is available to care for her? If there is a full time caregiver living at home? This makes the situation easier. Often adult children can be caught between the stress of raising children and caring for elderly parents. It is important that your children have enough of your attention and support. When that can no longer occur because of caregiver activity it may be time to consider nursing home placement.

RichOBoyle> now...is there a point where the loved one's health becomes an issue? are there any tell-tale signs?

[MarilynRantz.] People with dementia have different levels of tolerance for activity. Often behaviors will begin to occur or worsen. It may not be an issue of physical wellbeing and health, as much as does the environment at home allow for loved one to reasonably successful. People with dementia need to have environment that allow them to function in successfully. Many times family life is so very busy and chaotic that the loved one with dementia can't tolerate the level of activity.

[MarilynRantz.] Local Alzheimer's Association are great resources for people. They can help a family work through the behavioral and environmental issues that lead to increased levels of stress.

MarilynRantz.] Unfortunately, there isn't a lot of black and white with these issues.

RichOBoyle> Are there dementia-specific guidelines for NH placement beyond the ability of the family to provide care?

>> JerryH43 has joined channel #XC.1993632

[JerryH43] Good evening.

RichOBoyle> Hello Jerry and welcome

RichOBoyle> We had just started the chat

[JerryH43] Good.

RichOBoyle> We were just discussing criteria for NH placement of a LO with dementia...and Marilyn pointed out the family's ability to provide care as a key determinant

JerryH43] I agree.

[MarilynRantz.] No, not that I am aware of. I currently work with an Aging in Place Project so I deal with these issues daily. My one word of wisdom is that the caregiver needs to know when too much is being exacted from them. It is very difficult. I do not believe it is healthy for the caregiver to sacrifice their own health and emotional wellbeing.

RichOBoyle> Jerry is your mother still at home?

[JerryH43] Yes. She has been with us now for over five years.

[MarilynRantz.] How are things going?

[JerryH43] She's been bedridden since a year ago this past January.

[JerryH43] Well, it's been a little tough for my wife as she has had to be the caregiver for the past seven weeks.

[JerryH43] I had hip replacement surgery seven weeks ago tomorrow, so have not been able to help in mom's care.

[MarilynRantz.] This is a tough situation for all of you.

[JerryH43] I'm just starting to get involved again, at least to the point of feeding mom.

[MarilynRantz.] Are there community resources available to help with any of her care?

[JerryH43] There is respite care through Elder Services here but they are limited as to the number of days they can give us.

[JerryH43] But they have been a big help to us over the past few weeks. Plus, our next door neighbor has been over this week when the wife was at work to change and reposition mom for me.

[MarilynRantz.] Yes, respite care is tough to find. Have you worked the local Area Agency on Aging. Depending on which state you live in other resources may be available.

[JerryH43] We are in close contact with the local AD chapter. But to get regular home health care through the agencies is very expensive.

RichOBoyle> Jerry...would you say that you and your wife have the skills needed to care for her now? In the future?

[JerryH43] Yes. My wife and I are both nurses. I'm a LPN, the wife is a RN.

RichOBoyle> Wow you are indeed lucky... actually your mom is lucky :)

[JerryH43] Plus, I can't see my mom surviving that many more months.

RichOBoyle> I'm sorry that it is so advanced

RichOBoyle> I didn’t know

[JerryH43] She is like small fragile baby, unable to do anything for herself. She even needs cueing to swallow her food at times.

[JerryH43] Thanks Rich.

RichOBoyle> That is part of the progression of the disease

[JerryH43] Yes.

[MarilynRantz.] Does your Mom qualify for Hospice. They may be able to offer other support to your Mom and as well as to you and your wife.

RichOBoyle> Have you been considering a nursing home? Had you considered it in the past?

[JerryH43] We did have hospice involved a year ago when mom got so sick that we thought she was going out on us. Hospice told us not to worry about the six month deadline as they had never kicked anyone out of the program. but three months later they pulled out saying that mom was not dying fast enough.

[MarilynRantz.] I'm sorry that is very disappointing to hear.

[JerryH43] We've never considered placing mom in a nursing home unless it was for the purpose of respite.

RichOBoyle> It is so bizarre, but that is the way The System works

[JerryH43] True.

[JerryH43] We felt strongly that we could give mom just as good care as she would get in a nursing home.

RichOBoyle> Marilyn...May I ask another advance question?

[MarilynRantz.] Yes

RichOBoyle> Are there guidelines or a checklist that will help me determine when of if my mother is ready for a care facility or would be better off in one?

RichOBoyle> feel free to refer to your book if appropriate

[MarilynRantz.] We have guidelines and checklists for selecting a nursing home, but not for determining if the time is right to move to a nursing home.

[MarilynRantz.] The issue of placement of a loved one is very emotional. It really depends on the family’s tolerance for caregiving stress.

[JerryH43] I agree Marilyn. I've had conversations with several former caregivers who said that they just could not take the stress anymore.

[MarilynRantz.] When physical needs can no longer be met. For example skin integrity can't be maintained. Or wandering is a problem and therefore safety is problem. It may be time to consider placement.

[MarilynRantz.] I really do not believe that most parents want their children to continue to care for them, if it means harming themselves. The same is true for spouses.

[JerryH43] That may be true. I firmly believe that my step-dad literally sacrificed his life in caring for mom.

[MarilynRantz.] No one knows how they will respond until they cross that bridge. I admire people who have the will to keep going when it becomes so difficult. But, I also try to help them see good alternatives when I feel they be working themselves literally to death.

[JerryH43] He needed heart surgery, but kept putting it off because he was worried about what would happen to mom if he died.

MarilynRantz.] How difficult for all of you.

[JerryH43] He died six years ago this coming May. We moved mom into our home five years ago this past December.

[MarilynRantz.] Do you have children living at home?

[JerryH43] We have two sons, 18 and 21

[MarilynRantz.] How did they do with your mother moving in?

[JerryH43] They did OK with it at first. They were never actively involved with her immediate care. But they would stay with her if necessary for us to go out.

[JerryH43] We had a long talk with them before we moved mom from Seattle to Spokane.

RichOBoyle> Did you move your mom from Seattle to Spokane?

[JerryH43] Yes.

[JerryH43] We had to close her house and lock it up.

RichOBoyle> how did the move go?

[JerryH43] My baby sister was staying with mom supposed to be helping her, but instead was stealing money from mom to buy cocaine with.

[JerryH43] It went OK once we got mom in the car.:-)

[JerryH43] She did well for the first few weeks after we moved her over here. But then she started wanting to go home, even though by then she didn't know where home was.

[MarilynRantz.] Did she wander?

[JerryH43] Not after she came here.

[MarilynRantz.] That is good.

[JerryH43] She did wander away from her own home twice.

[JerryH43] Got lost both times and couldn't find her way home.

[MarilynRantz.] Wandering behavior is pretty frightening. So much bad can happen.

[JerryH43] Well, it is nice to meet you, but my wife just put dinner on the table.

[MarilynRantz.] Good luck to you.

[JerryH43] Thank you

RichOBoyle> Good night Jerry see you again soon

[JerryH43] Rich, good to see you again.

[JerryH43] Bye bye.

>> JerryH43 has left channel #XC.1993632

RichOBoyle> did you want to make any additional comments to the last question about checklists? Do you have any in the book?

[MarilynRantz.] There aren't any questions regarding when to put parents in nursing home. There is a scenario that describes the complexity of the decision and a section on long term care options.

>> wddcpa1 has joined channel #XC.1993632

RichOBoyle> hello wddcpa

RichOBoyle> and welcome

RichOBoyle> we were finishing up here

[wddcpa1] How is everyone tonight?

RichOBoyle> We had a nice chat earlier, but we are winding down

RichOBoyle> Would you like to pose a question for Dr. Rantz? and then you and I can chat

[wddcpa1] I don't have a particular question. I came late because I just came home from a two hour talk

[wddcpa1] this is my first time to one of your chats and I planned to observe

RichOBoyle> That’s OK... what kind of talk did you attend?

RichOBoyle> The advance question is fairly long, but I will summarize

RichOBoyle> For a person whose memory and behavior are still fairly normal but who has severe expressive aphasia, considerable urinary incontinence, and moderate apraxia, neither the ordinary assisted living facilities nor the specialized Alzheimer's facilities are a good fit.

RichOBoyle> Is it better for a person to be in better condition than the people she is around (able to recognize and make a wry face at their "crazyness" and subject to the more seriously demented residents invading her privacy and rummaging through her things), or to be in worse condition because of inability to converse or participate in many activities or to ask for help?

RichOBoyle> This problem has made choosing a place very difficult, and also created disagreement among some family members. Keeping her in her home is not an option for several reasons.

RichOBoyle> so it is kind of a long question, but there is a core question to it: what is the appropriate setting for a person with moderate dementia?

[MarilynRantz.] That is a tough one. In many parts of the country there are new systems being trialed. For example in Wisconsin and Minnesota there are housing with services options.

[MarilynRantz.] Some of these options allow small group home settings for people with dementia. They come in the earlier stages but stay throughout the rest of their life.

[MarilynRantz.] Depending on what part of the country this person lives in there may be some innovative approaches.

[MarilynRantz.] For most of us those new approaches aren't common yet. So we are left with the traditional models.

RichOBoyle> Now we have a case where the person with dementia doesn't seem to "fit in" ... which do you think is the better option?

[MarilynRantz.] What is their personality like? Does the rummaging behavior of others upset her, or her family?

RichOBoyle> that is a good question -- how is the individuals disrupted by the other people with dementia

[MarilynRantz.] While this person may know that those around her are acting "funny" it simply doesn't bother them much. It may be more of a troublesome issue for the family.

RichOBoyle> Perhaps the family should visit more often to give their loved one more of a sense of normalcy

RichOBoyle> or take her out for more day trips, etc

[MarilynRantz.] Well run Alzheimer Special Care Units offer an environment that allows for safe wandering , tolerance of behavior, quiet environments that offer correct levels of stimulation. Good ASCU also offer well trained staff that know how to interact with residents to help them maintain dignity and self worth.

[MarilynRantz.] A sense of normalcy is very important. Visiting often is extremely important. If a family visits often the staff of the home know they are engaged in the care and want to participate. They also know that questions will be asked if things aren't going as planned.

[MarilynRantz.] Rich the issues we have talked about this evening are very important. Caregiving at home is tough work. The right decision is the decision that allows for the best outcome for all concerned, not just the parent or spouse. Thank you for allowing me to participate.

END

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