Expert: Mary Gordon - 4/14/2009

Question
Hello Mary. I first want to tell you that your website has helped me more than I can articulate. Many thanks!!  My mother is only 72 and is in the final stages of LBD. I visited her on Easter (I live 250 miles away) after only two weeks from my last visit, she has declined tremendously. She now is unable to communicate, move and can only open her mouth about an inch to eat. I always take her for a drive and this time when I picked her up, she was "frozen". My dad has always said that he would bring her home when death was near. It is my belief and feeling that it will be soon. Do you think that I should encourage him to bring her home now??? I know it will be very difficult for him and don't want to overwhelm him.  I would love your advise!  Kent Baker

Answer
I'm surprised she has declined very rapidly - this isn't typical. It almost sounds like she might have some other health issue happening that is impacting cognition. Have they ruled out things like UTIs? Even a minor infection can make them seem to go into free fall mentally.

Has your father had a discussion with her doctor to get a prognosis ? Your dad needs a conversation with the doctor to figure out if the time frame might be 6 weeks - or 6 months - or even longer.

In  most places qualifying for hospice care requires that a doctor confirm the person's expected lifespan to be under six moths. The general guidelines are that the person be in Stage 7 of the disease (according to Reisenberg’s seven stage scale, sometimes called the FAST scale) and have some form of complication, such as:

Unable to ambulate without assistance;
Unable to dress without assistance;
Unable to bathe properly;
Urinary and fecal incontinence; and
Unable to speak or communicate meaningfully.
Some locations will require that the person not be able to hold their head up. .

The complications that may be present at the time of qualification may be:
Aspiration pneumonia;
Signs of a recent stroke;
Upper urinary tract infections;
Bed Sores or Decubitus ulcers (multiple, stage 3-4);
Recurrent fever after antibiotics; and/or
Difficulty in swallowing/refusing food.

Once you both have medical confirmation of what you are facing, you can work through the options together. Start with researching the local options and programs. Keep your father realistic about what he can handle. Don't let him take on more than he can cope with, even if his intentions and motives are the best. You know him well - how much can he take on in practical terms, particularly if this is a long haul. Can your dad deal with the relentless in-your-face nature of a slow passing in a home. or would he be better to be able to take breaks from it ?

Start with examining the easiest option -does her current care facility offer hospice type care? Do they have a specialized area for palliative care patients ? What kind of support services might they offer to help your father through this?  How flexible are they - for example, if your father wanted to stay with your mother during her final weeks, 24x7, could they accomodate him ?

Are there local freestanding hospice facilities she might qualify to enter ? Most of these permit family to stay with the person any time night or day.  

Are there local home based palliative programs that could assist your father ?  Is your father's home suitable to accommodate your mother's care - for example, is it all on one level? Is there room for equipment like a hospital bed, an invalid recliner (such as a gerichair) or a hoist if needed ? Would it be possible to bathe or shower her in his bathroom? Your mother will need heavy care and that is not always easy to manage at home.

Typical services from a home or facility based hospice team includes
Around-the-clock nursing care.
Training of family members in patient care, as appropriate.
Spiritual and emotional support for both the patient and the family.
Help with practical matters associated with terminal illness.
Speech, occupational and physical therapies (when these services are considered useful by the hospice team).
Coordination of services and care with the patient's family doctor.
Expert management of physical symptoms for comfort and pain control.
Bereavement and support groups for families.

What you need to find are programs or facilities that will assist your father as much as your mother. His health and well being have to be part of the equation. If your father wishes to bring her home, he will need comprehensive assistance from a team to organize and coordinate her care. He needs someone to look after him as much as her - to provide caregiving relief, to support him in the journey and  perhaps to provide homemaking assistance so he can concentrate on being with your mom.

So, start making some phone calls and fire up google to see what's available to your family
where your parents live. He may find doing the research to assess the options quite overwhelming, so he may need you to do it. That way you can do some judicious and loving screening, and present him only with those best options that might suit both of your parents' needs and limitations.

Hope this helps - your dad - and your mom - must have done something right. Sounds like they've raised a son to be proud of, and they are lucky to have you involved in such a loving and positive way.  

Mary G,