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Aunt refuses help; hygiene is so bad...
MrsATeaches5th
Posted: Tuesday, July 17, 2018 3:10 PM
Joined: 7/17/2018
Posts: 2


As I write this, I’m overcome with anguish, worry, and anger. My sweet aunt has been a surrogate mom to me since my own mom died when I was 21. She is more than an aunt; she is my best friend. My aunt has Alzheimer’s..

She was about 56 when she started showing symptoms, but she did everything she could to hide them. She took early retirement and then things got weirder and weirder.

She refused to go to a neurologist. It took my uncle 3-4 years of prodding. Their kids and myself did an intervention to get him to take her to a doctor. 

She went in and absolutely freaked out during the first MRI. So they only got one scan (they wanted two). Even with that - the dr told us what we already knew: Alzheimer’s.

Fast forward 3 years...my uncle is now retired and is doing all he can. But her symptoms are really challenging and I’m worried about her health ANd my uncle’s. My aunt has always been a somewhat angry and bossy person. This disease has gripped those aspects of her personality and we only see glimpses of the kind, loving aunt, mother, wife and teacher she used to be. Everything she doesn’t understand now is “stupid” and she has zero filter for who she tells that they are stupid, fat, ugly, she hates them, etc. as you can imagine this is very embarrassing. Yet she doesn’t want to be at home, so my uncle takes her out to eat for almost every meal. They go see movies almost daily. My uncle takes her all over to visit family and friends. The problem is her behavior is often not suitable for public, and she smells. Bad.

She  refuses to bath or change clothes. She hasn’t taken a bath/shower for 3 months. She has terrible hallucinations in the bathroom, but she won’t  let anyone come in and help. She smells so bad, and has sores on her skin. I’ve seen her wear the same clothing for months. I do believe my uncle does all he can to be gentle and bribe her do things but  it just simply doesn’t work. If she gets mad she starts screaming and calls the police.

She also doesn’t like my uncle to bathe. If he goes to take a shower she follows him into the bathroom, then gets explosive when he takes his clothes off to shower. He knows showering will lead to a fight and so he skips showers too (and yes, smells badly). She gets upset if he does laundry.

She has developed a “tic” of using those disposable tooth flowers out in public. She keeps one in her purse and uses it over again. She doesn’t switch it out until the floss breaks. It is the most disgusting thing in the world. I’ve tried to talk to her about it and she told me to shut up and mind my own business, while my uncle just shrugged his shoulders. It’s so gross I feel nauseous when we eat together because I can’t stand to see her do it at the table.

My aunt accepts no part of this diagnosis. She is at a point where she can’t be reasoned with. She seems to have forgotten about her children and really only talks about things from her childhood. My uncle has resisted becoming informed. I don’t blame him one bit- he is doing what he can to survive. He is the most patient man in the world.

So my questions- does this sound like the late stages of the disease?

Is it improper for me to suggest to my uncle that we move her to a care facility? There is a good one about 3 blocks from her house. I feel like my uncle feels like the right thing to do is to keep her at home for as long as possible, but because of the bathing, the hallucinations and the intense anger, I feel like that this IS that point. How do I help him?

 


Jo C.
Posted: Wednesday, July 18, 2018 7:44 AM
Joined: 12/9/2011
Posts: 10227


Dear MrsATeaches5th, we are so glad you have found us and we  extend a warm welcome to you.   This will be a bit long, but there is much to share.

This is quite a challenge being faced and one in which not only family members are suffering, but your aunt also is suffering.  If her behaviors are causing stress in her Loved Ones, (LOs), imagine how dreadful it is to live inside her head not only believing all those false beliefs, but actually FEELING them.  Her quality of life is very poor at this point, but there is help to be found. 

This is a situation that can beconsidered to be urgent for obtaining adequate medical intervention to assist.

You do not mention if your aunt has a dementia specialist and that would be key to obtaining adequate and appropriate assistance.   Our primary care MDs are awesome at so much, but they are not on the cutting edge of dementia dyamics and this can cause avoidable problem issues.

If there is a dementia specialist, then it is time for an appointment.  If your aunt does not have a dementia specialist, she needs to see one asap.  When new and at this point in her disease process, the best choice would be to see a good Neurologist who sees dementia patients as part of his/her routine practice.  It can take much time to obtain an appointment, but try to speak to the office nurse and explain it is urgent and also ask to be put on a cancellation list and call every day in the morning to see if any appointments have been cancelled for that day or other days in the near future.

Neuro is best at making an accurate diagnosis for just which type of dementia is present.  This is extremely important as there are multiple different dementias of which Alzheimer's Disease is only one.   Treatment/meds can be different for various dementias and in some instances, a med for one type can be contraindicated in another and make things even worse.

I would specifically ask the dementia specialist to rule out FrontoTemporal Dementia.  Your aunt's appears to be delusion driven, (rigid false beliefs), and she has lost her filters; none of this of course is her fault.   It is the impact of dementia damage upon her brain.

Simply placing her in a Nursing Home, (NH), is not the answer at this point.  She would continue suffering and NHs often will not keep highy problematic patients who are considered a danger to oneself or others or who are highly disruptive to other residents.

If worse comes to worse, your aunt can be taken to the ER where one can state she has had a change in her usual behavior and capabilities.  The ER can assess her and based upon findings, there are options.  One would be if she requires admission to deal with a physical problem, one can insist that an order be written for a Neurologist to consult on her case while in the hospital.

The other option would be to have her transferred to a Geriatric Psych Unit in a local hospital where she can be assessed on a 24 hour continuum and medication initiated to assist her in restoring her to a reasonable quality of life.   This must be a Geriatric Psych Unit as regular Psych Units are not highly skilled at managing dementia.

At this point, your aunt and uncle need someone to assist in advocating for them.  I found this to be necessary throughout my LOs dementia journey.

Not bathing for such a long time causes much bacteria and fungi to thrive on the body which can lead to some serious health issues.   Your uncle and family simply cannot continue to cater to your aunt's inappropriate demands which are a serious risk to her.  She must be taken, lashing out or not, to obtain adequate health care.

Aunt is no longer competent to format her own plan of care or to conduct her own business in any way.  She must depend upon the others around her to do so and make decisions for her in her best interest, behaviors or not.

Since all lesser measures fail to assist and Aunt is suffering, there are various meds that can be prescribed that can assist her and restore quality to her life as well as her husband.

My LO had FrontoTemporal Dementia and her behaviors were over the moon.   I had to learn the hard way that despite screaming, yelling, acting out in the most over the moon negative way, I was the adult in the situation and it was my responsibility to get her to care.  Nothing will help in such a situation except doing that.  Yes; she shouted, berated, acted out, lashed out, but the end result of obtaining adquate care was worth the onslaught.

I would also like to suggest that you may benefit from contacting the Alzheimer's Assn. Helpline at (800) 272-3900.  If you call, please ask to speak to a Care Consultant.  There are no fees for this service.   Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive, have much information and can assist us in our problem solving.

You are a very loving person who is trying her very best to find a way to help.  The only way will be to seek adequate professional assistance and in all probability, adequate and appropriate medication.

NOTE:   We are able to Post on any Forum we wish on this Message Board.  However, if you Post on the Caregiver's Forum, you will receive much more input as there are many more active Members on that Forum.

Please do let us know how you are doing and how your aunt and uncle are.   We will be thinking of you and we truly do care.

J.


jfkoc
Posted: Wednesday, July 18, 2018 3:20 PM
Joined: 12/4/2011
Posts: 17566


Hi Mrs A

A lot of info from Jo. 

I do agree that this would be a good post for the Caregiver board. May I share it there?


Mimi S.
Posted: Wednesday, July 18, 2018 6:25 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world. I'm so glad you found us.

From your library ask for a book written by Doraiswamy and Gwyther.  it explains what the diagnostic process must consist of.  Usually a large University or Medical School is the place to go.

A regular neurologist should see many dementia patients as part of his/her practice to be useful for you.

In my pinion she is not at end stage. A Memory Care placement may be a good idea if you choose carefully. Ask if they are trained in the FeilValidation method.  The skilled care she hopefuuly recieves, plus socialization, physical and cognitive activities will serve her well.


Mimi S.
Posted: Wednesday, July 18, 2018 6:28 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world. I'm so glad you found us.

From your library ask for a book written by Doraiswamy and Gwyther.  it explains what the diagnostic process must consist of.  Usually a large University or Medical School is the place to go.

A regular neurologist should see many dementia patients as part of his/her practice to be useful for you.

In my pinion she is not at end stage. A Memory Care placement may be a good idea if you choose carefully. Ask if they are trained in the FeilValidation method.  The skilled care she hopefuuly recieves, plus socialization, physical and cognitive activities will serve her well.