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Question from a daughter...
vjpb
Posted: Saturday, December 15, 2012 8:20 AM
Joined: 10/20/2012
Posts: 60


  My mom has AD and my dad has some undiagnosed dementia, almost worse than my mom (he can be very irrational).  I have been trying to let them have as much independence as I can and just monitoring things from behind the scenes.  Things are slowly getting worse and I struggle constantly with the dilemma of when I should take things away completely.  I have all the legal papers in order that they signed early this summer so that is not the issue.  My sister and I agree on the things that we need to do so I have her support.

 

My problem is that they will feel like I have stolen their independence.  They already have a LOT of anger issues with their diseases.  I love them and respect them and it goes against everything within me to do something to someone that is going to hurt and upset them very much.  But I know I have to...

 

I would like advice from some of you that have been diagnosed if that is okay?  My parents are both in denial of how bad things are or could become.  They refuse to talk about the future or help plan.  How would you want your LO to take care of you if you were in this position?   I wish I could have had this conversation with my parents years ago before the disease took a hold.    I am in awe of all of you.  You are facing your future and planning ahead but still living the very best life you can.  I guess I am using you as "surrogate" parents if that makes sense.  Thank you in advance on any help or advice that you can give me.  Blessing and may God Bless and watch over you! 


Iris L.
Posted: Saturday, December 15, 2012 12:47 PM
Joined: 12/15/2011
Posts: 18509


vjpb wrote:

  My mom has AD and my dad has some undiagnosed dementia, almost worse than my mom (he can be very irrational).  I have been trying to let them have as much independence as I can and just monitoring things from behind the scenes.  Things are slowly getting worse and I struggle constantly with the dilemma of when I should take things away completely.  I have all the legal papers in order that they signed early this summer so that is not the issue.  My sister and I agree on the things that we need to do so I have her support.

 

My problem is that they will feel like I have stolen their independence.  They already have a LOT of anger issues with their diseases.  I love them and respect them and it goes against everything within me to do something to someone that is going to hurt and upset them very much.  But I know I have to... 

 

I would like advice from some of you that have been diagnosed if that is okay?  My parents are both in denial of how bad things are or could become.  They refuse to talk about the future or help plan.  How would you want your LO to take care of you if you were in this position?   I wish I could have had this conversation with my parents years ago before the disease took a hold.    I am in awe of all of you.  You are facing your future and planning ahead but still living the very best life you can.  I guess I am using you as "surrogate" parents if that makes sense.  Thank you in advance on any help or advice that you can give me.  Blessing and may God Bless and watch over you! 


Vjpb, bless you for wanting to take care of your ailing parents!

You are not taking away your parents' independence.  Dementia has taken away your parent's independence.  Don't ever forget that.

Your parents are angry and confused but they are not angry at you.  Dementia escalates emotions and make patients' emotions volatile.  The generalized anger they feel may be directed at you because you are the closest person and in the confused mind, the closest person is the cause of their confusion and upset.  So dtip.  Don't take it personally. 

I wish I had a loving child to work with.  I hired professionals to help me.  The help they wanted to give me was not the help that I wanted, and conflict ensued.  I didn't yell at them but I did not have them come back. 

Now I'm working with a geriatric social worker who is giving me tremendous help.  She asked me what my needs were, and in turn, she brought up concerns that I had not thought about.  We are working together to meet my needs and to get things done.

It's easy to focus on the memory loss but one of the aspects that causes a lot of harm is the poor judgement and lack of insight.  Many patients develop this.  They may sound like they know what they're talking about but they don't make good decisions. You have to decide, as the daughter and person who cares about them, if their decisions make sense for them.  If they don't, then you have to do whatever is necessary to ensure that the correct decision is made and carried out.  The caregivers have all sorts of advice on how to carry out decisions and give good care.

Remember, your parents are not thinking clearly.  If they were in their right mind, they would be proud of you for standing up for them in their impaired state.  Once, when my mother was ill with cancer, but lucid, her doctor asked her a question.  She answered, "whatever my children decide for me."  I felt so honored that my mother trusted my brother and I so much.  That's why I know your parents would be proud of you for taking good care of them.  It is their illness that keeps them from recognizing your intentions.

Ensuring their safety is your priority.  If they are not safe in their home, in their kitchen, in their finances, or in their driving, then you will have to do what is necessary to correct this.  Ensure their safety, despite whatever protests they may offer.  You don't have to be mean or harsh.  Learn to communicate with the dementia patient.  You will have to enter their world, because they can no longer function in your world. 

It is not necessary to offer too many details of what you are doing because they won't be able to process details.  Keep reading the message boards and use the search function for whichever problem you are currently facing. 

Please continue to visit our patient board.  I'm sorry your parents are afflicted with this disease.  Remember to take care of yourself and your own family.

Here is some online reading material that may help you.

http://www.alzheimercambridge.on.ca/Understanding%20the%20Dementia%20Experience.pdf  

Anosognosia explains why dementia patients are unaware that they are ill:
 

http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf  

Our own Stephanie Z posted wonderful information on Communication with a LO with Dementia:
 

http://www.alzconnected.org/discussion.aspx?g=posts&t=2147488859

Iris L.
 


Myriam
Posted: Saturday, December 15, 2012 3:27 PM
Joined: 12/6/2011
Posts: 3326


vjpb, have you had a loving and caring conversation with your mother and father about their symptoms and getting a diagnosis? Do you know who their doctor is? Perhaps calling their doctor and describing in detail what you have witnessed and asking for his/her advise on how to proceed. Consider getting from their doctor the name of a neurologist or other dementia specialist who has extensive experience dealing with dementia, and making an appointment with him/her.


I believe your parents are in fear of what is going to happen to them. Please keep that in mind. Help them plan for the future, and if at all possible, in a way that doesn't threaten their feeling of independence. Yes, I know that is very difficult, if not impossible.


Consider calling the Alzheimer's Association nearest you and speak with one of their specialists.  They can advise you on services to assist your parents to live independently and safely as long as possible, and other options once safety becomes a concern. You can also call the 24 hour help line for advise.


Mimi S.
Posted: Saturday, December 15, 2012 5:43 PM
Joined: 11/29/2011
Posts: 7027


Hi vjpb,

 

You have been given some excellent advice from two wonderful members of our AD community.

 

It is so important that both your parents have a good diagnosis. Please refer to Doraiswamy and Gwyther: The Alzheimer's Action Plan.

There are possibly hundreds of other conditions which mimic dementia. Suppose either of your parents dementia could be cured with a shot of vitamin B-12?  I'm not saying this is the case, but many possibilities for the symptoms must be dismissed as part of a good work up.

 

If you call 1-800-272-3900 or pose the question on the caregivers boards, you will learn how others got a person to the right place for a diagnosis.


vjpb
Posted: Sunday, December 16, 2012 9:22 PM
Joined: 10/20/2012
Posts: 60


Thank you everyone for your help and advice.  We are working with the doctor but both parents have refused further testing.  They do not want to take any kind of medication.  Right now they are believing in the Lord to heal them and don't want any 'negative' talk.  (This is where my dad can get really irrational.)  I have tried several times to have a caring meaningful conversation but it does not work.  I believe in the Lord with all of my heart but also know that we should prepare for the possibility that healing on this earth may not be in His plan.

 

Iris...I would "adopt" you in a heartbeat :o)  Taking care of someone who actually would want the help would be such a nice thing right now.  I know my parents don't dislike me, that it is the disease talking but the emotional upheaval of all of this is exhausting.  I have always been mostly a "people pleaser" so it is not easy to do things that I know are going to make them so angry.  But I will continue taking care of them whether they (or the disease) likes it or not!  Blessings to all and a most joyous Christmas :o)


kelantol
Posted: Monday, May 6, 2013 8:57 AM
Joined: 5/3/2013
Posts: 422


I am months late to this thread, I know, but it hits close to home because I am dealing with a mother  in early stage Alzheimer's (or maybe not so early?).  The information posted by others dealing with memory impairment is so enlightening.  I hope things are going well for you and will watch for any updates.  We have never been down this road before.
Mimi S.
Posted: Tuesday, May 7, 2013 6:10 PM
Joined: 11/29/2011
Posts: 7027


Hi Kelantol

Welcome to our world. If your mom can use a computer i do hope she will join us here on our own message board. .


If you go above to Message Board and then to Caregivers, you will find others like yourself.


Also, now would a great time for you and your mom to investigate the Alzheimer's Navigator, below.

Now is also a good time for you and your mom to find an Elder Law attorney.


 
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