Caregiver Looking for Advice

Guatedad

My soon to be 80 year old mom has early to mid Alzheimer's. She also has macular degeneration which has rendered her legally blind. I am her only caregiver. She has severe depression and anxiety from events in her life and now declining health. She has a hard time accepting what she can no longer do or remember.

One of our biggest issues is the hallucinations or delusions. She sees people and bugs in my home on a daily basis. This is partly from the macular degeneration but is compounded with dementia. It often leads her to tears and she sometimes becomes manic because she doesn't know why I won't get rid of them.

The medicine she is on isn't helping much. She has so many issues and doctors that it is difficult to get her properly medicated. 

She makes too much money in SS for Medicaid and not enough for memory care. I also have to leave her at home for 8 hours a day while I go to work. I have no help, respite, or money to make her quality of life better. Everyone tells me she is in the in between stage where she is not sick enough for skilled nursing, but too sick to be left alone that long. Any suggestions on any of this are much appreciated. It seems like I'm in the perfect storm.

MN Chickadee

Have you met with an elder law attorney? They can help with the Medicaid. Rules are different in each state, but some states have paths to Medicaid in her situation even though she may make a little to much, such as setting up a qualified income trust. Her money goes in the trust to pay for care, the Medicaid program picks up the rest of the tab. An elder law attorney is essential in your situation. In some states Medicaid covers a little in home help and not just a facility. You want to speak to an attorney to be well informed on all services and rules. 

Who has been prescribing her medications as of now? It sounds like she is an excellent candidate for a geriatric psychiatrist. They are the best professionals to tinker with medications for the more challenging behaviors dementia can bring. It can take time and trial and error to find the right med(s) and dosage. 

WendyBAbq

Our neighbor was diagnosed with early/moderate Alzheimer's in March 2022.  She has no one to help her except myself and three other neighbors.  I have become her primary caregiver this past summer.  She is living by herself but we help her with meds/doctor appts, finances, groceries etc. I am trying to educate myself as quickly as I can so I can provide the best support to her and to me and my neighbors. Yesterday, she told me in detail about a two hour phone call she had with an old family friend she had been named after.  But there was no record of any phone call on her phone.  Has this happened to others love ones and should we be concerned?

Anonymousjpl123

I would also add that a psychiatrist seems like they could help a lot, and maybe some support groups for you. I found calling the Alzheimer’s hotline enormously helpful. The people on staff are actual experts and can help you navigate the next steps. Also, though I haven’t been to one yet, support groups in your area. Both the hotlines and many support groups are free. I am so sorry you are dealing with it but glad you found this site.