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About Mary Gordon
Expertise
Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.

Experience
Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

You are here: Experts > People/Relationships > Senior Health > Alzheimer`s Disease > dementia

Alzheimer`s Disease - dementia

Expert: Mary Gordon - 11/7/2009

Question
QUESTION: My husband had a massive stroke in Jan 08, resulting in left side paralysis and progressive dementia. He has been in a nursing home for a year. They are getting rid of him because of combativeness. They are not trained in dementia. I have been searching for a home that has a dementia unit but all have rejected him. Don't ant dementia units take persons who are in middle to late middle dementia? I'm scared for him and am frustrated by homes that only want beginning or end stage dementia patients. What to do????

ANSWER: Hi Dawn, is the reason they are rejecting him because he is physically combatative ? I ask because if he is acting out in any physical way, the facilities may be afraid that he will harm staff, or worse, harm the other frail residents.

If he has a neurologist, and her or she won't assist with the mood and behavioral issues, ask to be referred to a neurologist or psychiatrist with a speciality in dementias. Quite often, major hospitals have dementia clinics. As you know these mood and behavioral issues are very common in mid dementia, and there ARE medications and behavioral approaches that can help. It isn't just about making him easier to care for. It's about him being as comfortable and happy as possible. It must be miserable for him to be so upset all the time. You may have to be persistent. There ARE things they can do to help calm him down and make him feel more at peace. They may have to try different medications, try different doses and try different behavioral approaches. It will help if the facility is more tuned in to the special needs of dementia patients.

You don't mention what state he is in at the moment. If he is very physically disabled, dedicated dementia units may not be able to handle him.

For example, my mother in law spent a year in assisted living, and then had to move to a locked Alzheimer's unit. She needed 24/7 supervision and support, and the original assisted living facility couldn't provide that, plus the security she needed (she had to be kept in a locked ward for her own safety).

In the specialized AD ward, residents had to be able to walk- they could manage people who needed a walker and who needed support and assistance, but they couldn't manage people who were completely unable to walk, or transfer themselves from bed to chair, stand up to be dressed etc. They also wanted people to be able to feed themselves and be able to do some basic things with assistance. If your husband cannot walk or stand on his own, and is incontinent he may well require the kind of heavy care that only a nursing home can provide.

When my mother in law could no longer walk and stand on her own, and thus needed complete care, she had to leave the AD ward and go to a nursing care unit. They just didn't have the staff ratio and equipment on the AD ward to deal with someone who couldn't do much for themselves. She lived a full two years after the point she stopped walking.

Here are some links that might help point you to resources and give you some idea of the types of care options there are.

http://www.alz.org/we_can_help_senior_housing_finder.asp

http://www.assistedseniorliving.net/ba/alzheimers-disease-dementia-care/

http://www.alzinfo.org/alzheimers-disease-continuing-care-information.asp

Hope this helps. I know this is very discouraging.

Mary G.

---------- FOLLOW-UP ----------

QUESTION: Mary,
Thanks for your response. My husband, who is 66 and very depressed about his losses, is in northern Maine in a nursing home. He has vascular dementia. He speaks very well and is very perceptive about people, as he always was. I used a monitor at home so I could hear signs of distress but taught him to call help when he needs something at the nursing homes as he cannot use a call button.
The staff at the home where he has been for a year make fun of him and do not respond to his cries for help. They have called the police on him although they would not on a retarded man who was there because "that man was mentally handicapped". He knows he is not liked and hides in his room. He is afraid most of the time and wants me with him as "things are not so nice when I'm not there."
It was not my decision to move him but I feel it is a blessing in disguise now that I found out all that has been going on. I stay there with him about 10-12 days and nights a month( he has become very dependent on me) so have seen some of it but a CNA who is good to him has told me other things.
Jeff can be combative. He is in severe pain because the home refused to take him to his Botox appointment, which I had been taking him to for a year.I would have taken him but they didn't let me know they cancelled his appointment. I did take him the next time even though they had already cancelled his appointment AGAIN. They didn't want to pay. I took him as self pay but the state would not allow it as it was the homes responsibility. He is not on enough pain medication and the doc would not increase it until I called him last week to tell him about his severe pain. The pain wakes him and is with him all the time. Hopefully, the medication increase will help. I believe that his combativeness is, in part, due to the pain, and his being sleep deprived. He does have periods of significant confusion but he has never hit me or my friend. These people at the nursing home hate him and he knows it. I think I would hit some of them too and I am operating with entire brain function not the half that he has.
He has been referred to a psychiatric hospital in Portland to stabilize him. They have already changed many of his medications. I think it is for the best but it is 7 hours away and it will be difficult to see him. After that, we will continue to look for a place that can be more understanding and caring for him, if such a place exists. He has been in other homes, 2 worse that the present.
Jeff is incontinent for bladder but wears a condom catheter at night to let him get a full night's sleep. At least he does when I am there. Drainage bags are thrown on the floor in the A.M. unwashed to be used again so I guess it's good that they don't follow through when I am gone. He needs to be wheeled to the bathroom for b.m.'s. He can try to feed himself if it is finger food but can't set up his food alone and uses the wrong utensil or fingers if left alone... or he does,not eat because it's too hard to do. He needs someone to take care of all his hygiene needs but does notice when he is not shaven or doesn't get his teeth brushed. He tells me he is filthy and that he just wants to feel human again. He is accurate about this. He can be a lot of work but I did it alone for 7 months and I am disabled. Hopefully, there is somewhere that will take him that can provide him care without resentment or slacking off because they don't think he knows. He is usually pleasant and humorous, even now. He longs for acceptance, as we all do. He was a professional man and was humiliated by the police. But he wants to be home and misses me which bring on tearfulness and suspicions about what I might be doing. I will go where he goes but I want him somewhere that the staff is trained to meet his needs, understand his diagnosis and treat him kindly. Is there somewhere like that? This current placement is a 5 star nursing home.
Dawn Frost

ANSWER: Hi Dawn

If he has been treated the way you describe, it's a good thing he's out of that place! He deserves better - and he should not be left in pain. That is really unnecessary and unforgivable. He needs palliative care - which is care aimed at controlling symptoms and making sure he is not suffering - emotionally, physically, mentally or spiritually. Everyone deserves to be treated with dignity and respect. You probably want nothing more to do with that home, but I would write the director of care a letter letting him or her know how disappointed you were with the unkind treatment your husband got. No one should be mocked. No one should be left hurting. No one should be scared or feel rejected.

Here is the office of the ombudsman, if you need supports with this kind of thing going forward.
http://www.maineombudsman.org/

Here are some nursing home resources in northern Maine

http://www.mainealz.org/Docs/Local%20Services/Aroostook.pdf

http://www.mainealz.org/Docs/Local%20Services/Washington.pdf

http://www.iqnursinghomes.com/Maine-Nursing-Homes--1-ME.html

Here are nursing home ratings

http://www.memberofthefamily.net/registry/me.htm

Hope this helps. I hope you have a better experience with his next placement. You are doing the right thing getting him stabilized in hospital. He needs proper care to get on top of his pain, so he can be more comfortable and settled.

This must be very hard on you. I'm thinking of you.

Mary

---------- FOLLOW-UP ----------

QUESTION: Hi Mary,
Thank you for all the very helpful sites. I will use them in selecting a new place for my husband. One last question... How do I file a complaint? I'll only do it once he leaves but I noticed the facility he's in is rated higher than it should be. Thanks again so much.
Dawn

Answer
Hi Dawn, to register complaints against Nursing Home or Hospitals in Maine, you can call the complaint hotline 1-800-383-2441

Or alternatively, you can contact the ombudsman's office in Maine

Brenda Gallant
State LTC Ombudsman
Maine LTC Ombudsman Program
1 Weston Court
P.O. Box 128
Augusta, ME 04332
Tel: (207)621-1079
Fax: (207)621-0509
website:http://www.maineombudsman.org

Hope this helps

Mary G.

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