So frustrating Always seems to be arguments Past accusations of affairs that didn't happen thinks people are taking things cuz he can't findNow not just others but meTonight says he thought I was the one who would take care of him 24 7 but apparently not in his prayers for me to hearWould like to hear others coping strategiesWe go do everything together I'm 62 he 73
Coping strategies to prevent burnout...
The main one is to make sure you are still keeping yourself your #1 priority as much as possible, as in doing self-care first and foremost. Sounds like right now you aren't able to take breaks.
Have you called your county's social services to get him assessed for in-home services? Get him a case worker and talk to them about options for him.
Contact your local Area Agency on Aging for resources. Call local Senior Center to see if they have Adult Day Care programs.
Call local churches to see if they have any Elder Care Ministries. My church has this and we do visitations to elder "shut-ins". You don't have to be a member or believer. And synagogues, too.
Next, I would educate myself about his dementia/ALZ. Teepa Snow has a great video series on YouTube. I have learned useful strategies for interacting with my LOs with dementia since they can no longer change themselves, we must be the ones who adjust. She has lots of insights for caregivers. I highly recommend her videos.
Does your SO have funds to hire an aid for a few hours either daily or a few times a week so you get a regular break? Look into Care.com for this.
Now I want to ask about the Bigger Picture for you.
Has he assigned you (or anyone) as his PoA? If he doesn't have a PoA then at some point you will struggle to manage his financial and medical affairs legally. HIPAA rules will prevent you from getting information from his doctors. I would have this discussion with him (in the mornings when he is fresh and not Sundowning) to try to get him to understand the importance of having a PoA (and you need someone for yourself as well, and it obviously cannot be him).
If you read other posts on this forum you will come across many stories about what happens when someone doesn't have a PoA and then loses their capacity to make decisions in their own best interests: they get assigned a court-appointed 3rd party legal guardian. Many people get nervous about this solution, but in the end, it IS a solution for both the incapacitated person and their LO.
Your situation is a little trickier because you (apparently) are not married. States do not recognize "common-law" marriages. So, unless he has named you specifically as a beneficiary on his financial accounts (like his checking, savings, investments)... you do not automatically receive that money since you are not his spouse. If shoule at least have a Will leaving you property and assets. I'm not trying to give you more things to worry about but "forewarned is forearmed". You must think about your own future as well so that you don't inherit a disaster -- and we read about those disasters every day on this forum from distraught SOs who were blindsided after their LO passed but made no provision for them.
This is why we often recommend a consultation with a certified elder law attorney. Often the first one is free.
I wish you clarity, wisdom and peace in your heart on this journey, and respite for your body and mind.
Discuss with his doctor about these problems and there are medications that can help with the anxiety.
You can not argue with a person with dementia it will do nothing but frustrate both of you and that will lead to more anger and frustration.
Learn to walk away. If you have to wear earbuds or headphones. (as long as it is safe to do so)
If there is any potential for violence you have to call 911. Explain the situation and say that you are afraid for your safety.
You have to make sure you are safe. If he hurts you who will care for both of you?
Chronic pain is difficult in any case but with dementia it can be m ore problematic because it is difficult to tell if the pain is "real" or if he is just so used to pain that his brain does not know if he is in pain or not.
Is he on Hospice? He may qualify and if that is the case you would have a Nurse that would come at least 1 time a week to check on him. A CNA that would come at least 2 times a week. The Nurse orders any medication, medical supplies and equipment you might need. The CNA in addition to giving a bath or shower will order any personal supplies you need. You would also have a Social Worker and the rest of the Hospice Team that would be there to support you. And a little known benefit is that Medicare/Medicaid will cover Respite Care for Hospice patients. so you can get a break. And you can also request a Volunteer that can come sit with him for a few hours each week.
Would encourage you to learn more about the disease you are dealing with and way to handle conversations by watching all you can of Teepa Snows videos. You can "google" them easily and they are free to watch.
If this has been a problem for 25 years it isn't due to Alzheimer's entirely. He would otherwise have been only 48 at that time. So I am assuming this is now progressing. If he is in chronic pain and taking painkillers this long then that is also a part of the problem.
You may be looking at a limited amount of time you can continue this care if you cannot moderate his actions and your reactions, so I wish you the very best of luck. He is young still and may have many years more.