Angry right now

akc783

Anyone out there ever get frustrated to the point of even being angry at the total LACK of answers available for this disease? My mom is in (I think) Stage 4 Alzheimers. But then it could be Stage 5. I can’t get a good answer from a doctor. There are no good answers. No good answers on how long I can expect each stage to last. She could live 8 more years or 15 more years. There is literally NOTHING that can really be answered!!!!! All I know is I have to keep living like this and that there is no end in sight possibly for many more years.

I realize I am preaching to the choir but that’s why I came here.

es3303

I am upset every day at the lack of answers and consistency between physicians. My father's appt. with a top neurologist keeps getting pushed out and our initial wait was 5 months; one week prior, the office rescheduled it : (

I cried and cried. Nonetheless, I can relate. Hang in there <3

sandwichone123

Yes. I get frustrated at the lack of answers, at the fact that Alz research was barking up the wrong tree for so long (IMO), that so much research is canceled now, that families get so little support, that the care for someone with Alz is considered not "medical" care and so not covered, that many of the few supports available are not available if the patient is under 60 or 65, and on and on.

poppyluv

no answers but all the frustration.

SDianeL

yes it’s frustrating. I felt so alone until I found this community. The problem is that doctors have no answers. There are online charts that show the behaviors in each of the 7 stages but doctors don’t like to discuss those because each person progresses differently based on many factors, one of which is what area of the brain is affected by the disease. The other is that a person can have some of the behaviors in a stage but not all. Behaviors can show up later or not at all. So the stages chart should only be used as a general guideline. The only doctor who helped my DH was a Geriatric Psychiatrist who prescribed anti psychotic meds to help with hallucinations, agitation and sleep. I would ask for a referral to one asap if your LO is not already seeing one. The disease is progressive with no cure so doctors can’t do anything after the original diagnosis unless the person qualifies for a trial for early onset. I am so glad I found this group. They helped me so much. Here you will find answers on how to care for your Mom. Read the book “The 36 Hour Day” if you haven’t already. Look for other books and videos on caregiving. We know what you’re going through. Hugs. 💜

weareallunique

Top Doctor at a world center for memory research said EXERCISE was the trick in last visit . Patient in a wheelchair needing two assts. Can't remember motions for in place exercises. Um, don't think so. That ship sailed. [And the patient stayed as active as they could well into the disease course].

But the Facetime watching the Dr hopping around was fun to see.