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Need counseling for family
MammaJoe, All the suggestions given here are GREAT ONES! My local Alz.support group has a joint (but in different rooms) support for Caregivers and people with dememtia. I dont know if this website will start up video conferencing for people, but there is an International Dementia Support Organization that already has videoconferencing: Dementia Alliance International.org.
You could also try that too, and perhaps all ur family members could watch together...just a thought. When i sought some counselling in how to deal with dementia, i asked for psychologist who had lots of experience workimg with clients who deal with dementia. He is such a GREAT counsellor and always encourages me. If u decide to try counsellimg with a psychologust or social worker, if u dont like them, try out someone else!
Hello Mammajoe and welcome. You have found a very supportive place to land and we are happy to have you with us. In order for Members to understand the issues better, I have taken the liberty of copying your Profile information here:
"I am a recently retired teacher, part-time substitute teacher. My mom has suspected Alzheimers. She will not go to a neurologist for a diagnosis but her primary physician has given us her opinion that she indeed has the disease. At this point my mom seems to be in the moderate stage but things are deteriorating rather quickly right now. She lives with my brother and is strongly resisting assistance with financial and medical issues. We need advice on how to help her because of her refusal to acknowledge any problems that occur."
END OF PROFILE
This will be a bit of a lengthy Post, but there is so much to share.
While a Support Group will be helpful to you and your brother, at this point it does not sound as though it or a social worker would be directly helpful with your mother.
Unfortunately, in this state of things, the brain has sustained damage which affects the ability to have good judgment, to use adequate logic and to reason adequately. Our LOs at such a point often move with feelings and often have rigid false beliefs and will be in the emotion of the moment. Very often, they will rail against those who are doing the most to help them. I have experienced that and while it can be very hurtful, try to remember that it is the damage to the brain that is causing that and try to not take it on a deeply personal level. That eventually passes, but it is one of the longest lasting stages.
These are some of the most common issues faced with our Love Ones (LOs). I had to deal with this with my mother. What I found was that she was adamantly resistive to seeing a dementia specialist. The word dementia being applied to her caused her to go into a downhill slide of persistent irritability, high resistance and digging her heels in as hard as she could and also to mistrust us. Her behaviors and acting out were dreadful.
We found it necessary to never, ever mention the word dementia or Alzheimer's in front of her, ever. I had to wait a bit and get Mom back to her primary care MD. We had to use a therapeutic fiblet along with her primary doctor for a reason to get her to a specialist. We just did not call him a "Neurologist" or mention demenia in any way, shape or form. Doctor told her her blood pressure and back pain, etc. really needed a second opionion by a specialist and Mom bought it. Of course, I also had to clue the Neurologist in about the situation before the appontment. Nothing they have not heard before.
What I also found was that never, ever could I talk about Mom in front of her. What I did when each doctor's appointment came up was to write a detailed memo outlining all the changes in memory, cognition, function and behaviors and fax it to the doctor's office about three working days prior to the appointment. I notified staff it was coming and was time senstitive to an appointment and to please get it to the doctor asap. I followed up to ensure this was done. As a "just in case," I also carried a copy of the memo to appointments in my handbag in case the doctor somehow missed it. She should never go to appointments by herself for the obvious reasons that in this state, she will be a poor historian, be inclined to fib, and will not recall accurately or honestly about what the doctor tells her.
Sometimes we try and try and cannot gain cooperation right away; then we must wait for the other shoe to drop - or when we find our LO in a better frame of mind; strike while the iron is hot.
It is most important to see a good dementia specialist as there are multiple different kinds of dementia of which Alzheimer's is only one. One needs to know with accuracy which dementia is present as treatment/meds for one type may be contraindicated in another and even make things worse. A good Neurologist who sees dementia patients as a routine part of his/her practice is the gold standard for geatting that accurate diagnosis. It can take a while to get a spccialist appointment as they are so in demand.
Another thing I had to do as soon as I could was to get all the necessary legal paper taken care of and of course had to use a fiblet to get that done too. One needs a Durable Power of Attorney for Healthcare as well as a DPOA for Finance and a HIPAA Confidentiality Waiver. I told my mother that I was getting my "Estate Planning" done and that the lawyer would do her Estate Planning too at no extra cost. If I had told her in other terms she would have hit the sky and never got to the attorney.
If ever she is in a very good frame of mind and you can talk openly with her; you might mention that if she was ever ill or could not help herself, she would need someone to be on her accounts with her who could help pay her bills and her doctor until she was able to do so again and see if she will put your name on her financial accounts. This saved me SO much trouble as things went downhill.
We have also found that if our LOs begin to develop sudden changes in behaviors, and sometimes even cognition and function, have the LO checked for a "silent UTI." These UTIs are called "silent" because they often have no physical symptoms but there will be a huge change in the items mentioned above; especially in behaviors until treated.
The Alzheimer's Assn. has a Helpline that can be reached at (800) 272-3900. If you call, please ask to be transferred 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 wonderfully supportive, good listeners, have much information and can help us with our problem solving.
One of the most helpful tools in the Caregiver's Toolbox is that of the, "Therapeutic Fib." This is not a moral lapse, but a kindness to our LO. To get someone to the doctor, one may have to fib as mentioned above; or even say that it is an appointment for YOU, and we will go out to lunch when I am done. Clue the doctor in and when he/she listens to your heart and takes your BP, he/she can then talk to your mother and give both of you a "test," or whatever. Fiblets keep our LO from deleterious meltdowns and permits us to get things done that otherwise would never have been able to be addressed. NOTE: It is also very important to never argue, point out, try to change her mind, etc. To do that causes more behavioral issues, and resistance. We learn to validate feelings; that is . . . instead of addressing the actual words they are saying; instead address the feelings behind the words. Anger, upset, sad, etc. Everyone wants to be validated. Even if you have to go along with their skewed belief. She misplaces her purse and blames you . . . "Oh gosh I am SO sorry I moved your purse; you have every right to be angry and upset; it is my fault and I will get it for you. " Or . . . ."The dinner was terrible and you are upset about that and I do not blame you; you are right. I am so sorry and I will do better next time." You get the point. BUT: Immediately after validating the type of feeling; refocus her onto something else whether it is going to the kitchen to get cookies and tea, or seeing something interesting out the window, or doing a task.
Mammajoe; there is definitely a learning curve to all of this and we all fly by the seat of our pants until we get the various items into a reasonable line. You and your brother will do well; it will take a bit of organizing but it will eventually get there despite feeling as though you are trying to nail Jell-O to the wall..
Remember that there is no perfection in all of this; just the best you can do under the circumstances with the challenges at hand. In the meantime, both you and your brother are so welcome to join us; it is a very supportive group.
With warm thoughts being sent from one daughter to another,
Whoops - forgot to mention that it would be a good idea to see an Elder Law Attorney without your mother being at the initial consultation. You wll need that specialist if you have not already done so. He/she can advise you on the documents you really need; how to position your mother's finances, etc. to best suit her future needs; can discuss Medicare and Medicaid; and in all of this, ask about formal Guardianship IF that ever becomes necessary. Sometimes that does happen when things are so far off the rails that our LO is in dire straits.
Dear Mammajoe, please be assured that you are doing the absolute best that you can do and it is clear from your posts that you care deeply. You ARE measuring up.
I don't know if we ever feel like we are doing enough to care for someone with this horrid disease. Unfortunately, the way it manifests itself is often the LO is resistant to care and does not realize that there is any problem. The challenge, then, for caregivers is to figure out workarounds so our LO gets what s/he needs.
I placed my mom in a MC facility because she refused all help when she was living independently. She was not taking her medicines reliably, refused to have someone look in on her and check her meds, and in her mind, she believed that she was fine and independent. Interestingly enough, she now feels like she is independent! She is happier and less stressed than she has been in years. Even with that, though, I still sometimes feel like I failed her because I couldn't care for her. But, intellectually I know that I did what needed to be done: she is safe, clean, comfortable, well fed, and as happy as she can be.
So, you will find the right road for your mom. Please know that you are not alone...all of us here have struggled in one way or another.