When a person was unkind and rude to begin with, I am seeing it only gets worse. With all the devotion and caregiving from me (wife), and the fact I am doing it all on my own, I get no thank you from him and no support or thank you from his side of the family. It is very difficult, especially when my husband tells me to F myself. It is hurtful. Who else gets this? Input appreciated.
Don't expect anything good from him or his family. People with dementia lose the part of their brains that control inhabitions. I found Teepa Snow videos on YouTube to be very helpful. She is an expert on dementia and caregiving. She educates on how dementia causes the behaviors you now see and will see in the future, but gives strategies on how to better engage with your husband to have more peaceful and productive interactions.
He cannot change. You are the only one that is able to change now. Dementia robs people of their reasoning and logic skills, so they have increasingly poor judgment. It takes away their ability to empathize with others, so he can't care that he's hurt your feelings. You cannot engage with him as if he's his prior, pre-dementia self. That person is going, going and eventually will be completely gone.
I'm so sorry for your circumstances. Does he have all his legal ducks in a row (ie you are his FPoA and MPoA, and he has a Living Will)? If you aren't his PoA this will surely become a problem if/when you wish to transition him to a facility.
You should also consult with a Medicaid Planner for your state. Better to know if he can ever qualify than waiting for a crisis to try to figure this out. I wish you much wisdom, clarity and peace in your heart on this journey.
P.S. seriously, his family isn't obligated to participate in visiting or any of his care. This is a hard truth. But if they happen to ask how they can help, be ready with 1 or 2 concrete suggestions ("Please come for a day so I can have a break and go to my own medical appointments" or "Come take him out for a long drive when he's Sundowning" etc).
I updated all of our insurance policies and I am
getting ready to see someone to prepay for direct
cremations for both of us so I have peace of mind.
Decide when enough is enough and that YOU matter too in this equation. Then get him placed.
Good luck to you
Can you find a care facility and make sure he gets in it? Your mental health is at stake.
I've gotten off cases because they were too painful to watch especially when you know someone has reached a point where they are going to need a higher level of care. Family made the situations worse and will attack the caretaker. You will know when you have reached a point that you can no longer function at the level before this person's disease progressed to where it is now. Dementia is a progressive disease.
I agree with Teepa Snow and that is the brain is broken. You don't need to know the ends and outs of which part of the brain is being affected. It's good to know enough about the progression of the dementia in your loved, but at this time, it is more important to protect your health, mental health and your well being during the process.
It is hard on the spouses and I can't begin to imagine what it must be like for the person suffering from this disease and going through the frustration of no longer being able to communicate and function as they did before. I was telling my former supervisor about my younger disabled sister and the behavior of soiling the bed and certain behaviors. She asked me; "Can she express it any other way?" My answer was no. This conversation took place over thirty years ago.
All I can add to this, is that you are there out of love, and for better and for worse. This is the part of the vows we don't think would ever come to fruition but it does eventually. Reality hurts, but it's real. My husband died suddenly from liver cancer in 2016. I remember telling the palliative care doctor, I thought we had more time.
Seek out counseling for yourself even phone counseling works. It gets hard at times even for those of us who are in the trenches. We are not always on our A game to not feel or get hurt when a client or a loved one comes for us. Also, when a person's level of care needed increases, caregivers, POA's and giving up POA's are transient realities. Some people are just better at certain roles than others. One one person steps out of the ring, another one steps in.
If this has been an unhappy marriage then you should place your husband in care, and get on with what life you have left free of HIM. If however, this is a change for him, and related to his dementia, well---- as we always say----- it isn't HIM, it's the dementia talking. And there is nothing at all to be done about THAT, but again, decide when you have had enough, and place your dear hubby in care.
I sure wish you the best. As I am certainly you already know, this won't likely be changing. So it is up to YOU to change things on your own. You might also ask Mom if she wishes to "speak with sis" when she calls and be certain phone is being overheard by sis. If she says yes, allow her to, and to handle the call on her own without your interference. No questioning and talking about it afterward. If Mom complains tell her she needs to speak with Sis, not you. All this to say, do not allow yourself to be pulled into the middle of this.