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My mother-in-law has been diagonised with CBGD. My father-in-law is taking care of her right now. She is mroe or less fit excpet for the fact tht she falls down often and has speech problems. Her memory is almost unaffected. My husband is their only child and we are staying out of the country now. We wont be able to go back now. What do you suggest for the caregiver? What should be our attitude towards her? She often threats my Father-in-law that she wil commit suicide, she doesnt want to live anymore. She is 53 and under medication. Please advice.  Thanks a lot in advance!
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Hello Rimi,

I apologize....I don't know how I missed your post. Welcome to the Caregivers Forum. Again I am so sorry that I missed responding sooner.

I would be concerned about a 53 year old that is threatening suicide. Her threats should be reported to her physician and taken seriously.

She may just be experiencing the 5 stages of grief as identified by Elisabeth Kübler-Ross in 1969. Yes ppl with a life altering illness, chronic pain or a terminal illness will often go through the stages of grief, grieving for their former lifestyle, their former self.  

These five stages are: Denial, Anger, Bargaining, Depression and Acceptance. These stages do not necessarily occur in the stated order. Some ppl skip a stage or skip back and forth between stages or never enter a stage.  

The medication could be adding to her mental status. Sometimes narcotics or other medications can cause or add to depression. I encourage your FIL to speak to her PCP and get her into some type of therapy. This will help her sort out her feelings and a therapist should be able to determine if her threats are real or just a normal part of the process.

I don't know how much you know about CBGD. Depression is common. Dementia can be a prominent feature of advanced disease and may be the most common feature. Aphasia can be seen in over 50% of patients. Apathy, social withdrawal, bizarre behavior, hypersexuality irritability, and anarthria have been described.

Your FIL should not be over looked. Care-giving is one the the hardest things you (or he) will ever have to do. No one can imagine the stress and anxiety that Caregivers experience unless you have been there. He needs some support and releif. I hope someone is giving him Respite hours. It is so important. He has to be well in order to be a good Caregiver. He may also benefit from some therapy.

It's sad that your husband, their only child and so far away. I encourage him to call home as often as possible. hearing from those you love is so important. If at all possible I encourage him to return for a long visit. His parents need him. They were there for him and in my opinion he needs to be there for them to the best of his ability.

Mean survival rate for persons with CBGD is about 8 years. As dementia sets in she may not recognize her son and time may be of the essence if your husband would like some quality time with is mother.

My heart goes out to all involved. Cards, letter, phone calls will mean so much to your husband's parents at this time.

Best of Luck,
Thank you so much! Your suggestions were really helpful. I didn't think about my FIL so much till I read your reply.
Primary caregivers are often overlooked by the very people most involved in the situation.  I heard it time and again while caring for my mother.  My siblings finally saw that I was nearing a breakdown, but they didn't step up to the plate.  They really thought that I could just turn my back and do nothing.  That was their idea of me taking care of myself.  It never mattered that I begged them to do X, Y or Z and take some of the responsibility.  There was usally an excuse to remain uninvolved leaving me holding the bag.  Now that she's gone, they're left with their own guilt.  Miss no opportunity to tell your loved ones just how much you do love them, and follow that up with loving action whenever possible.  It doesn't have to be anything big - just a visit or regular phone calls.

I understand that many people have zero skills when it comes to illness and end of life issues.  Many people simply can't face it head-on and hide until the ugliness is over - to much everlasting regret.  It's frightening for everyone involved, and learning those skills tends to be on-the-job training with little guidance from the medical profession.

Dementia was the worst part for me.  Watching my mother slide toward death over the last year of her life was bad enough, but to watch her mind go...  she was so intelligent and logical and organized and she knew she was losing it.  I could deal with tears and depression, but Mom reacted to her body's changes with anger.  It's exhausting to try to have a conversation with a patient who has dementia.  It didn't take too long to figure out what would trigger an angry outburts and either avoid it or redirect the conversation to safer topics.  The rest of my family weren't around Mom enough to hone their own skills and instead chose avoidance as a defense.  I hope and pray that their regret taught them not to run away when they're next faced with the same situation.
I am caring for my mother-inlaw and she has CBGD With Demitia, new things happen every day! Can anyone tell me about the mucus biuld up and also what pain we will be exper., she has massive spasms at this time and the med dope her up to the point she barly knows what to do. If anyone has input or ideas I would be greatly appr. Thank You Rita
My mother lives in India and exhibits CBGD symptoms.  She recently got a PET Scan to confirm.  She lives in India and her condition makes it very difficult to travel to the US.  If I send a scan would anyone be able to offer advice based on that.  I would greatly appreciate the help.  I am willing to pay as well.

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