Have to repeat same things I’ve said, forgets wallet. Doesn’t enjoy things he used to. We’ve talked about it a couple times and he recognizes it but now I feel like he compensates and wants to ignore it but it’s difficult not knowing what really is going on
I hope you will fill in your profile about the person you care for and about yourself; it will greatly help us answer you if you intend to stay around in the Forum.
We really need to know more about Uncle:
1. Who does he live with. Other than yourself, what support system does he have?
2. Are others noticing the change?
3. Do you feel Uncle is a danger to himself? Does he get lost? Forget to turn off the gas?
4. Does Uncle live alone? Who checks on him? How often?
5. Does Uncle have a POA?
6. Does Uncle still drive?
7. Who else in the family is involved with/concerned for Uncle?
Truly, you cannot help those who do not want to be helped. At the point that you fear your uncle is a danger to himself I would consider a call to APS asking for a wellness check to assess mentation, ability to function alone, and tell them that he has not been cooperative in getting any assessment and you fear for his safety.
I think that's about all you can do. We all die. Whether we die of a housefire, wandering off in inclement weather, a fall, or die sitting in the easy chair in a nursing home, we all are going. As to which is the better option, few of us really can know, or have a vote.
I would check on Uncle with a daily phone call. If unable to reach for a day I would check; ask if you can have a set of keys for said check-in. Ask if he will cooperate at least in this.
I would lean everything you can on dementia to see if you see other signs that you didn't realize. Also, start recording everything you see to have ready for the doctors when the time comes.
I'm very sorry 😔
"He has gone to Dr and has had and some lab tests - b12, hormones and other standard labs. He told me he wants no pity or treatment of any kind, does not want to see neurologist which could be why he is not telling me more because I will press for tests and early treatment. I just want him to be honest if things are worse than what he is letting on so we can plan for future or do I wait until things get worse and something happens? This also is affecting our relationship."
Well... he can say stuff like he doesn't want pity or treatment but that won't solve the problem of him getting the appropriate care as he declines -- not to mention the poopstorm he will leave for his loved ones to manage.
It needs to be impressed upon him that he can put legal controls in place so that he gets the best care for himself. People tend to focus on the death part, but not what precedes it: the decline and dying process -- which can go on for a long time.
He may not be telling you more because he may have the beginnings of memory impairment. Doctors ramble off a bunch of instructions at the end of the appointment so maybe it's confusing him so it's easier to pretend he doesn't want to tell you. Maybe he can't. Does he have a friend or male relative who may be someone he'd allow to accompany him? Or, help him set up a medical portal online, and then he can easily check his past tests and diagnosis.
Even if you "wait for things to get worse or something happens..." unless you (or someone) is his PoA then he WILL become a ward of the county and probably transitioned into a crappy county Medicaid facility. It doesn't have to be that way if he just does a few wise things now, like assign a PoA and go see his doctor for depression/anxiety meds.
One way to get him to the doctor is to tell him that what's going on with him may be treatable with a simple course of antibiotics, like for a UTI. Or, he could have diabetes, high blood pressure, etc. -- all of which are treatable and he may return to how he was. Medicare offers a free annual wellness check, so it won't even cost him anything. There is no one test for dementia so to get an accurate diagnosis, his doc would need to eliminate all other health issues first.
I've personally done the "secretly pass note to doctor" thing with both my MIL and Mom. The medical staff was happy to accommodate family who are struggling to help family members. Both my MIL and Mom did not need to see a neurologist in order to get meds for depression/anxiety -- which were very helpful and made a big difference. But a patient cannot get them without a full physical first.
If your family member has as assigned PoA, this person should be notified of what's going on. If he doesn't... he needs to get to an elder law attorney to get this put into place so that he doesn't get assigned a court-appointed legal guardian in order for anyone to manage his affairs and make decisions on his behalf. He will have more control if he is proactive. As time passes, and his possible dementia progresses, he will lose this window of opportunity.