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Posted: February 23, 2004

Practical Caregiving

Dealing with Second Medical Opinions, Mom?s Feeling of Being ?Kidnapped,? and Making Nursing Homes Accountable

A question we all ask at various times is whether and when to consult another doctor for a medical opinion. Cathy isn't sure if it would help but she's not comfortable with her mother's current doctor.

Janet feels like she ?kidnapped? her mother from her home a year ago. Her mother has Alzheimer's disease and doesn't feel at home with Janet. Does she really want to go to the home she left a year ago or maybe her childhood home?

When your loved one is in a nursing home, what do you do when they aren't being taken care of the way you think they should be? Linda is frustrated and needs to evaluate things for her father.

These are just a few of the questions pestering caregivers who have contacted me via my e-Mailbag looking for a friendly ear and practical advice. Here's our dialogue:

Dear Jean:

My sister read some information about getting help from a neurologist for a patient with dementia. What is your thinking on this situation? My mother is 95 and she sees a family practice doctor. He will listen, but he kind of goes along with what we think or ask. Would there be any benefit for her to see a specialist? She has not been given any tests or examined specifically for dementia, we've only had the doctor's comments.

I know you went through helping your parents and you might have some ideas or experience that we don't know about. Cathy, Sioux City , Iowa .

Dear Cathy:

With today's medical advances and new treatments available for a whole range of conditions, your mother definitely should have a complete check-up and evaluation by a specialist. There could be something besides dementia causing your mother's problems. There are also several things that can cause dementia. And sometimes a disease is not actually diagnosed, but there are signs or symptoms that indicate a disease or condition such as dementia.

Doctors sometimes hear a person's age and decide that this or that is the problem, just because of their age. Your mother's doctor may be a good doctor, wonderful person and very concerned, but perhaps he is a doctor who is blinded by your mother's age. An opinion from a specialist will help determine this.

There are several medicines that may help your mother, if the doctors agree that it is dementia. Aricept helped my mother. Aricept was fairly new when her doctor prescribed it. She had deteriorated to the point that she didn't know any of us and she couldn't do anything for herself. It did help her. Later, she reached a point that she wouldn't move or respond when I talked to her. The doctor increased the dosage, and she started sitting up, talking and responding again. She was like a 2- or 3-year-old child then and stayed at that point until she died a year later.

You and/or your siblings need to constantly ask the doctor about her health, her medications, other alternatives and anything else you can think of. You need to know as much as you can about your mother's health and what options there are. As you have found, much of her future is in your hands.

One more thing you might find helpful. Check out the story in the upcoming February issue of our newsletter The Caregiver's Home Companion on how to get the answers you want and need from your parent's doctor. I think you'll find it interesting.

Dear Jean:

I talked to Mom a few times about her moving in with us, but when the time came to move she didn't remember our talking. She has Alzheimer's, and a year ago I felt like I ?kidnapped? her out of her home. I know that a person with Alzheimer's doesn't adjust well to changes, but will she ever feel at home here? I know I did the right thing, but I just don't feel that way. Janet, Charlotte , North Carolina .

Dear Janet:

Yes, you did do the right thing. She is safe in your home and she would not be safe alone in her own home.

Your mother probably wants her home, but not the one she left a year ago. She probably wants the home she grew up in. This is not uncommon for Alzheimer's patients. Do you have any furniture or pictures from that era that might feel familiar to her? Does she have anything from her childhood that you could sit somewhere? Perhaps you could introduce a doll or stuffed animal into her life that she might become attached to.

There are other small things you can do to make her more ?at home? in your home. Remember that change is difficult for the elderly in general and especially so for Alzheimer's sufferers. Arrange the furniture so there are clear walking paths and then leave it that way ? forever. Serve her meals at approximately the same times every day. Try to have things calm around the house so she doesn't get confused or agitated. She will get upset and not feel at home when things seem confusing.

Dear Jean:

I don't know if you can help me or not. I am very worried about my father who is in a nursing home about 25 miles from me. I get into town to see him and run around to get things done as often as I can (at least once a week). I have so much trouble with the nursing home losing his watch, teeth, glasses, cutting hair too short, infections caused by his indwelling catheter, etc. Much of the time I can't find the people I need to talk to in the nursing home about these problems.

I am depended on almost totally, and it is making me very frustrated and down. I expect his care to be more than he is getting. Linda, Topeka , Kansas .

Dear Linda:

I can understand your frustration. Having a parent in a nursing home isn't the answer any of us would like, but there are times when it is necessary.

When you see something that isn't what you want it to be, try to determine whether it is causing health problems for your father or if it is just different than it would be at home? A nursing home does not have the staff to always do things the way they are done at home.

His hair being cut too short is not a health issue. He can live just as well with it short as he can with it a little longer. His teeth and glasses are much more important, and when they are missing you should make sure the staff finds them. They may be in another patient's room. Nursing homes are notorious for ?misplacing? things. Granted, sometimes the ?misplaced? item (such as a watch) is actually stolen, but you usually can't prove anything. Label everything, and don't leave anything at the nursing home that is valuable or important to him or your family.

An infection caused by his indwelling catheter is something you should talk to the doctor about. Perhaps you should also check with another doctor who is not involved with the nursing home. You need to find out if it happened from a lack of care or if it is just a problem that happens with an indwelling catheter.

Ask yourself questions like these. (The answer should be yes). Does your father get enough food and liquids? Does he get enough exercise? If he wears adult diapers, do they change them often enough? Does he get his medicine on time? If he is bedridden, do they turn him often enough so he does not get bedsores? Is he clean? (The answer to the next two questions should be no.) Has he fallen? Has he had a broken bone? If you can't give the correct or complete answer to the above questions and any other questions you have, I would strongly suggest that you find a different nursing home.

© 2004 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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Please send me your questions, comments and issues regarding the practical side of caregiving at ASKJEAN@caregivershome.com, and remember to take advantage of our professionals and experts in the Ask an Expert section of our website. You'll find it in the left column on our homepage.

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