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LGBT Community and Allies
My spouse has been diagnosed with dementia. She is 76 and has had memory issues for a number of years. In January, she woke me up telling me that we had to get up because a man was coming to the house to pick up a room heater. I knew this was not true, but I could not convince her of that fact. After about 1-1/2 hours, I convinced her to accept that it could have been just a dream. She was still dubious, but she accepted that we had not contacted anyone to come by and pick up a heater, especially one that we were using.
This week-end she spoke to her sister on the phone and after the conversation, came into the kitchen and said that her sister was not feeling well, but other than that, all seemed to be fine. She made no other mention of her sister or the phone call the rest of the afternoon and evening. Monday morning she told me that she didn't know how, but we needed to help her sister because she was afraid for her life and that her husband might kill her. I was very unsure about this information, but knowing that if it was true, we did need to help. I made some calls to police stations in her sisters area and got information about how to handle domestic abbuse problems and got the hotline number etc. I told my spouse that according to what I had been told we could ask the police to make a visit to determine if all was ok. My spouse said that would put her sister in more danger so I said that we would need to talk to her sister again.
I convinced my spouse to wait a while before calling because we didn't want to cause any problems if there was something going on. She agreed to wait. I went to work and while out of the house, I called some of the other family members and one had spoken to the sister the same day that my spouse had spoken to her. He said that all seemed alright. There was no indication of domestic problems.
Long story short, her sister went to the hospital for high blood pressure and high blood sugar and was admitted. They ran tests and she was released within 48 houirs, but was told to follow up with her regular physician and was given some names for referral. There was no domestic abuse going on, but my spouse was convinced that the threat was very real and in her mind still is. She still believes that her sister is a victim of domestic abuse and that is in grave danger.
Has anyone else had similiar experiences or is this something outside the dementia?
Hello Gladys and a very warm welcome to you. You have found a place where your situation will be totally understood as so many of us have experienced much of the same. I am sorry for what is happening with your spouse, Elaine, and can imagine the stress and concern this is bringing to you.
What seems to be happening is something we do indeed see in many of our Loved Ones (LOs); and that is, she is experiencing "delusions," which are rigid false beliefs. This is caused secondary to the damage within the brain. It will do not one bit of good to argue with her or point out the actual facts as her beliefs are as real to her as the chair you are sitting on.
Sometimes, when this happens, rather than respond to the words she is saying, is to instead validate the feelings behind the words. "I am sorry to hear about that and that it makes you feel upset. I will help with this . . . " then refocus her by getting her onto a different topic, or having her help with a small chore, or by saying let's go get some coffee and cookies.
One can also use a "therapeutic fib," which when things get very dicey is a very helpful tool in the caregiver's toolbox. You can say something along the lines of, "I was so sorry to hear of that problem with your sister, but I called and the police have handled it and your sister is now doing just fine." Fiblets are NOT an ethical breach; they are often the kindest way to assist our LO who is in the midst of an upsetting false belief. If delusions are pleasant there is no reason to try and mediate them; but when they are upsetting and becoming entrenched, then one needs to address that dynamic with a dementia specialist.
One thing I did not see when I read your information was if Elaine had seen a dementia specialist yet or not. Being that she resists seeing doctors, I have a feeling this has not yet happened.
It is very important at this point to get Elaine to a dementia expert. Our primary MDs are wonderful for so many things in so many ways, but they are not on the cutting edge of dementia care and this makes a huge difference.
At this point, it would be best to have Elaine see a good Neurologist and it must be one who sees dementia patients as a routine part of his/her practice. The crucial bit you need is to find out just which type of dementia Elaine has.
There are multiple different types of dementia of which Alzheimer's Disease is just one. Treatment for one type of dementia may well be contraindicated in another and can make matters even worse. Neuro is best at identifying type of dementia which will give you the template for what will develop in the future and for what treatements will be most helpful.
Becauses of Elaine's symptoms, I would ask Neuro to rule out one of the behavioral variants of FrontoTemporal Dementia, Lewy Body Dementia and Vascular Dementia. FTD and LBD are two dementias that have very important contraindications for some meds that treat dementia.
You may have to use one of those fiblets to get Elaine to the Neurologist or even say the appointment is for you and take her with you. One thing I did when taking my LO to the dementia specialist appointments was to write a succinct but detailed memo for the doctor describing all of the changes that were present which can be faxed one or two working days prior to the appointment. I would call the office staff and let them know it is coming and to please get it on the doctor's desk asap and then I would call to ensure that had been done.
By doing that, the doctor has all the information necessary to conduct a valid exam and you do not have to speak about Elaine in front of her which may cause some upheaval. I usually carried a copy of the memo to the doctor's office with me and had the staff go and ask the doctor if he had read the memo; if so, okay . . . if not, I gave them the copy from my bag.
This is a journey where there is no perfection; there is only the best you can do under the circumstances with the challenges at hand and you are already doing that and have become a good advocate on behalf of Elaine.
You will find lots of support here, but I would like to suggest one thing. This LGBT Forum does not have a lot of traffic, so you will be missing a lot of input.
We all may post anywhere on the Message Board and that is so for you too. No worries about LGBT, we have had many go to post on both the Caregiver's Forum as well as the Spouse/Partner Forum as this is where the vast majority of members are and this is where you will get so much more input. It is up to you, but you will be welcomed with open arms.
NOTE: The Alzheimer's Assn. has a Helpline that can be reached at (800) 272-3900. If you call, ask to speak to a Care Consultant. Consultants are highly educated Social Workers who specialize in dementia and all that surrounds that diagnosis. They can be very supportive, provide information, help problem solve and also have referrals to helpful entities within the community. There is no fee for this service.
Please do let us know how you are and how things are going. I will be thinking of you and am sending best wishes your way.
If you would like to do some reading on the subject
Anything by Naomi Feil with the word Validation in the title.
You might also cut down television, especially talk shows, night time dramas, and the news. Classic tv might be okay, but then again, might not. Television images and stories can be triggers for delusions. Or you might cut out tv altogether, and do other activities.
I would add a other point view this, as some one with disease prett advanced.
What can happ lot us is we can 1) dream ver vividly an thus confuse real. An 2) we can have trouble interpreting information we have.
You say she talk sister an sister no be feel well. This means she go off think, be concerned sister. Soon the concern turn huge. Now she be try make sense it. Only her failing brain can no figure out. Now she be get scared as well, an concerned. The onl thing that be make sense when you that scared that concerned is sister in trouble. What is one kind trouble could be? Oh her husband could be want kill her. Make sense me.
This is NO a delusion per se. Delusions are like that you think you be king George. It just be trouble processing, because this disease process.
I try be tell peop try be get past words she be use, try be hear what she be try say. She be say she scared her sister, concerned her sister. What do we do when scared concerned some one, we call them check in. Try talk with her her feelings - rather than what she be say literally.
I agree with advice validation, comfort her. Oh that must be seem so scary, you sound real concerned you sister? Let her talk say. Then add, what be some things you be like you sister? Oh yes, those be real nice things bout her. Then may be remind her some thing her sister. Remember when you two went Disneyland? Or some such thing.
Dementia is no chemical imbalance, it be brain dying slowly...bits pieces failing shutting down which makes it hard us put two tow gether as well as be fore...but does no suddenly make us crazy. It helps be remember that each these things be in phases. Least help me keep this in mind.
Teepa Snow has some great videos on Youtube this issue you might be like:
She be say, tell her you will "take care it"
Hope that be help some. <3
You are so welcome Gladys, and we are looking forward to seeing you further on the Message Board and getting to know you better.
By the way, your little furry friend in your photo is adorable!