Newly Diagnosed but won’t accept help

Yankeegirl83

 I had a feeling that something was wrong with my dad for awhile, but he refused to go to the doctors to get himself checked out which I am seeing is a theme with many patients. Luckily, disability had set up a doctors appointment with a memory care physician which we forced him to go to. The report pointed towards dementia, so now we are trying to figure out next steps. He wasn’t showering for months, wasn’t eating, basic hygiene was lacking, and refused to pay his bills despite having the money to pay them. We were forced to put him in an involuntary evaluation, which is actually going really well, and we are hoping that they will tell us the level of care that he needs. They’ve also said that he is in a severe depressive episode.  I am his only child, but I don’t live close to him, and he has a girlfriend that lives with him, so he’s not inclined to move closer to me at this time.

Does anyone have any advice to get him to accept the at home health aide that it is most likely going to be requested by the doctor? I would love to get him follow up appointments to get a true diagnosis that is not based on the disability doctor. Ideally, I would like somebody to come to his house and sit with him, talk to him, make sure he has a meal and take him to any doctor appointments if necessary. Is there a specific job title for this? Are people willing to help for somebody that necessarily may not want to help but it is necessary? I would love for him to move closer to me, but that thought totally overwhelms him. Any help is greatly appreciated, thank you.

Cynbar

The tasks you are describing are usually handled by family. Is the girlfriend willing to do this, take more responsibility for him in general, take him to doctor appointments and consult with the medical professionals, make him a meal, ? It doesn't sound like she hasn't been doing it up to now, but maybe she didn't see the need before. You can hire a private aide for some of it, like sitting with him or making him a meal, but she would be unlikely to be too proactive. One idea is to hire a geriatric case manager who would provide oversight and arrange for staff to do most of the hands on work, but that runs into money and you haven't mentioned what his finances are. The home health aide the doctor is referring will likely stay around an hour with the main focus personal care and possible making a very simple meal. If he won't move closer to you, a geriatric case manager is a good idea . But it's very hard to get someone to do things they don't want to do.

Yankeegirl83

Thanks for your reply! I’ve been doing everything I can from a distance, hoping to get POA soon. He has some money to pay for things, so I’m going to look into your suggestions. I’m trying to treat this like a case of a family member that lives alone and far away and will not move. For example, if I mention lack of hygiene etc. he will say he showered yesterday and it’s tough to argue that when I’m not there to see, despite that I know it’s not true.

star26

Do you have financial and healthcare POA for your father? If not, this should be your top priority. You need this to pay his bills, arrange caregivers, etc. I think it's also time to be focused on investigating and securing all finances since there is a live-in girlfriend and you are out of state. He's at risk for financial exploitation. 

A home care aide provided by an agency or hired privately can do meal preparation, provide companionship, and take him to doctor's appointments. The cost is around $20-$30/hr. It's probably easier for you to use an agency because they'll take care of background checks, paying taxes, covering for sick aides, etc. The company I used also had an online portal so I could read the daily notes from the aide about what was done each day.  You can do a google search to find companies in his area and interview them by phone. You can fib to your Dad and tell him that the aide is required by his doctor. You can also fib and tell him it's temporary if that calms him down. I started by telling my Dad the aide was a housekeeper but that he could ask her to help with anything he needed. (like an employee hired for his convenience rather than someone being there because he couldn't be left alone.)You will need to hire and pay the aide yourself (with you Dad's funds) and make it clear to the aide that you are the boss, not your Dad. Experienced aides should know how to handle a client that doesn't want them there or insists they leave. My Dad's aides would stay in another room and keep an eye on my Dad without him knowing and occasionally bring in a snack or meal. In time, he warmed up to it and there was more companionship and joint activities. 

If he's been seen by a "memory care physician" and is getting inpatient psych treatment, he may already have what's needed for a true diagnosis. Here's a list of diagnostic steps so you can compare it with what's been done for your Dad. 

https://www.alz.org/alzheimers-dementia/diagnosis/medical_tests

Yankeegirl83

Thank you so much! Will look into an agency and POA is top of mind for me. He would agree to POA and then backtrack when it came time to do it because he didn’t feel like he researched enough what was happening. I’m hoping the doc visits now are enough info to claim a necessary one, but will do more research into that

Iris L.

Yankeegirl83 wrote:

  I would love for him to move closer to me, but that thought totally overwhelms him. 

That thought and many other thoughts will be overwhelming for your dad.  This is what dementia IS--being overwhelmed because we can't think like we used to.  I use the word "we" because I am overwhelmed, too.  

Back to your dad.  YOU will have to figure out how to take the initiative on decision making without scaring or overwhelming your dad.  You will learn how to do this from the members here, and from watching Teepa Snow videos on YT and reading The 36 Hour Day.  

The majority of PWDs have anosognosia, meaning they are unaware of their limitations.  This is not the same as denial.  Most often they will say they are doing fine and don't need any help.  It is better for you to visit in person and observe with your own eyes.  Or, as posted above, a social worker or a nurse from his health plan or a private geriatric care manager may make an assessment.  Read a lot of threads and post questions as needed.  Members are experienced and helpful.  

Iris L.