When and how to take over?

@corinda omg you poor girl! I JUST had that happen with his primarycare—. He said my husband didnt need to be tested if he didnt want to — of course he doesnt want to! He is a toddler and proclaims i am completely fine”— and he believes its.
then our primary care doctor told me (in front of my husband) that i cant talk to him about my husbands situation because of hippa and that i could go to prison if i try to again- so now— my husband laughed outloud with a ‘ha- ha’ like a schoolyard bully. He sure got one up on me, he thought.
Very hurtful, but also…if me as his caregiver cant talk to his doctor, how am 8 supposed to take care of him adequately?
Plus- like the neurophsycgologist you saw said, our primary care also said a diagnosis makes no difference at all. I beg to differ— it DOES. Then we caregivers would have a name to what we are battling and when our husbands say cutting biting things to us we would know that it is only the disease and not the man himself. What do we do? anyone have thoughts? hang in there my friend— we are in very similar boats.

@rebeccagrover It has been my experience as an RN with over 45 years of experience dealing with patients and families that YOU the caregiver who sees the patient day in and day out are the one person whose opinion of what is happening with your loved one is most valuable. I have had family members say that there's something wrong with the patient but they can't name it, they just know something is different and concerning. And I believe what they have to say. What I did when I noticed that my husband was having memory issues was to discuss this over the phone with his internist. He had no problem discussing this with me because he knows I have durable power of attorney for health care for my husband. If you don't have a DPA for health care for your husband, I would get one as soon as possible. You could frame it as you wanting to know what his wishes are for future care. You can download this form from your state medical association. My husband has had the mental acuity test that is done in the doctor's office for the last 5 years. The doctor framed it as part of his yearly exam. It shows a continued decline in his mental capacity. He has not had a brain scan to test for dementia. At the time it was suggested he said he didn't want it because it would only tell him what he already knows. He is a retired physician. He has had the lab test for amyloid plaques and tau particles. The result was negative so he doesn't have Alzheimer's but probably has vascular dementia as did his father. His interest agrees. He has physical problems such as being unsteady on his feet and has fallen 3 times in the last year, broken rib, fractured vertebrae and subdural hemorrhage. Most people don't realize that as dementia progresses, the patient loses peripheral vision. They see as if they are looking through a pair of binoculars. I would strongly suggest that you read/learn everything you can about dementia in general. It will probably validate what you already know but more importantly it will give you the terminology to name what you are seeing in your husband's behavior. I have taken 4 live/online Dementia caregiver courses offered by Dementia Specialist Teepa Snow. You can find her online. I learned SO much and it gave me the knowledge of how to cope with the dementia behaviors and my reactions/feelings about them. This I think is an important way to take care of yourself going forward. God bless you. Keep posting here. We all understand how difficult and frustrating this journey is for both you and your husband.

@corinda omg you poor girl! I JUST had that happen with his primarycare—. He said my husband didnt need to be tested if he didnt want to — of course he doesnt want to! He is a toddler and proclaims i am completely fine”— and he believes its.
then our primary care doctor told me (in front of my husband) that i cant talk to him about my husbands situation because of hippa and that i could go to prison if i try to again- so now— my husband laughed outloud with a ‘ha- ha’ like a schoolyard bully. He sure got one up on me, he thought.
Very hurtful, but also…if me as his caregiver cant talk to his doctor, how am 8 supposed to take care of him adequately?
Plus- like the neurophsycgologist you saw said, our primary care also said a diagnosis makes no difference at all. I beg to differ— it DOES. Then we caregivers would have a name to what we are battling and when our husbands say cutting biting things to us we would know that it is only the disease and not the man himself. What do we do? anyone have thoughts? hang in there my friend— we are in very similar boats.

@rebeccagrover Change docs!!

The balance issue is concerning. How about a cane? My husband is mid-stage Alzheimer’s and is often terribly confused, but on several occasions he has walked the dog outside at night and somehow it brought him back to reality.

Dear @2me

My husband has good eyesight but he developed what I call "visual processing" and "spatial relations" difficulties rather early in the process. By that I mean that:

1. Visual Processing He started having a hard time with some of the mental processes that enable us, normally, to UNDERSTAND what our eyes see, and

2. Spatial Relations. He lost the ability to mentally perceive the presence of things he could not see. Think of how babies don't know that something is there unless they can actually see it: It makes Peek-a-Boo so fun, but it is a hard way to go through adult life. Distances and directions became increasingly difficult for him to manage. I cringe every time someone asks him to "move your right___".

Your husband's dementia may be taking this kind of turn. I understand it is common. For example a dark rug on the floor may look like a hole to a dementia patient. My husband started to get stuck at thresholds, even though they are the same ones he had stepped over for decades.

As you can imagine, this means that darkness, which gives all of us a hard time, is dangerous. Also, the transitions between light and darkness may not be that apparent to them, so seeking the light from a porch light when he has gone into darkness may be a struggle. This is compounded by the spatialIn my husband's case things to the side or behind him (including chairs) became hard to deal with.

Try the headlamp with caution. I applaud the idea, but say this because I use a headlamp when I walk my dog intthe dark and it is not a consistent light on the path ahead, It is a bouncy, fairly narrowly focused and moving light . As such it cannot light the sidewalk and the area in front of him and it requires good skills at visual processing. If he is having visual processing issues it may be confusing.

My gut says do whatever you can to convince him to stay in at night or simply make it a new house policy, because a fall and break would be a terrible price to pay. As I am learning now, there are enough potential fall risks associated with this disease, we do not need to accept one's that we can control.

All the best.