Young and option-less

Voscilation

Hi all, myself and my girlfriend of eight years are both 24 and we recently began taking care of her Dad who was diagnosed with Alzheimer’s in early 2021 after being diagnosed with Dementia (not sure what type) for several years prior. He’s quite young at 64, and quite healthy otherwise. We both recently graduated and are beginning our careers with jobs we greatly enjoy.

His now ex-wife decided to divorce him in June of 2021 after being separated for over ~14 years. Lots to unpack there, but I’ll skip that this time around. 

His sister was taking care of him from 2019 until December of 2021 when she told us that we needed to take care of him as she was done with the situation. We tried to explain that we were not ready, but here we are. His brother also refuses to take care of him.

I was planning to propose prior to all of this happening, but I didn’t feel like the timing was right. My girlfriend and I have discussed this and are in agreement and on the same page. I love her dearly, but taking care of her Dad is putting a toll on both her and I as our lives are on hold in what feels like our prime time to work on our dreams and aspirations. 

It’s hard for me to watch her interact with her Dad when he barely remembers who she is, let alone the fact that she is his daughter. I’m unsure of our options as there isn’t money in his retirement or savings to facilitate paying for full time care. He has disability income and medical costs are covered by that and a combination of Medicare and Medicaid. 

I just want the best for her and her Dad, and I’m unsure what to do.

T. Slothrop

Voscilation,

The situation you describe is heartbreaking, and just wrong!  You and your girlfriend should get married and have your own life together, not saddled with relentless, pointless tragedy. Of course she wants to help her father, but I can’t believe her father in his right mind would have wanted her to sacrifice her own happiness this way. I hope she can find help, and a different path. 

jmlarue

Since dad is already approved for and receiving medicare and medicaid, there should be no trouble getting him placed in an Alz or memory care facility with no additional financial support from his children. It's understandable that his daughter would want to care for him, but that really is not a responsible solution for anyone. His condition is terminal and his cognitive decline will progressively get worse until he requires 24/7 care. There may be issues with wandering, incontinence, problems with eating/swallowing...the list is long and not pretty. Help your girlfriend look for a facility for her father where he will get the best care possible and you two need to get on with your lives. You are quite right. No loving father in their right mind would want their daughter to sacrifice her own life and happiness for his sake.

Pat6177

I can imagine that this situation is overwhelming to your girlfriend. When I started dealing with my DH’s dementia, I had no idea what I needed to do. But given my age, I could figure out a place to start. More then anything, right now your girlfriend needs information about what options are available and what actions she may want to take. On this forum, new folks are regularly advised to see a Certified Elder Law Attorney (CELA). Your GF will want to know if her father has a will, whether he has done durable power of attorney (to handle financial issues) and a medical power of attorney and if he has these documents, who is named as the power of attorney. It’s not clear from what you written if he is able at this point to sign those documents if he doesn’t already have them. 

A CELA will also help to determine if the PWD (person with dementia) has the financial ability to go into a facility (assisted living or memory care). If he is on Medicaid, then he may be able to go into a facility and what your GF has to do is find a place where he can go. If not on Medicaid, then the CELA will explain how to apply for that and how to qualify. 

According to others that have posted on this site, some CELAs may provide an hour free and then charge after that. And definitely call a few lawyers offices and ask the receptionist what the CELA charges since the rates can vary widely. 

In your GF’s shoes, I wouldn’t know where to turn, what to do or where to start. If her mother isn’t able or willing to help, then a CELA would be a good place to start. 

You might also receive more responses if you post on the general Caregivers’ forum. This forum is for the spouses and significant others of the PWD. The regular forum has many adult children that are caring for parents and they may have better suggestions. 

Whatever your GF decides to do, it will be a difficult and emotional road. I’m sorry she has to deal with this. Good for you for looking for help for her.

Marie58

Pat6177 has really good advice. Read it carefully and help your girlfriend start the process. 

My DH is in MC, but before we placed him, I made sure I had a plan if something happened to me and I shared it with our son. I know DH would never have wanted them to put their lives on hold because of this horrendous disease. Yes, our son would be POA and very involved, but they would have placed him and not been responsible for the 24/7 care.

Bless you for helping your girlfriend!! I'm sure she's heartbroken and stressed and may not even know where to begin.  

storycrafter

You couldn't have come to a better place to find information, answers, empathy, and options. You're in the right place for self education. I've learned much more here than from all the many doctors we've been to over the course of many years. Reaching out for support is an excellent first step. Your being here sets a good example for anyone/everyone of where/how to begin when life throws such a difficult curve ball.

Another good starting place is your local Center for Aging, sometimes called "Area Agency on Aging," or something similar.  They often have an expert social worker or similar retired professional volunteer who will meet one-on-one to help caregivers come up with a plan and put them in touch with local resources. Also, anyone can attend Alzheimer's Association meetings, contact the group's facilitator and they can begin to point you in helpful directions for finding answers and support. The groups can help with creative solutions, thinking outside the box, and provide empathy which gives energy needed to move forward.

Your girlfriend needs to keep seeking, searching, and reaching out for support until she finds the help needed. Don't give up.

Others will be along with more ideas, but I hope you'll find something here that's helpful. Big hugs and best wishes coming your way.

Scooterr

There's a lot of good advise that has been given  on your post. You guys are young and just getting started with your lives, and the road down caregiving for a LO with dementia  is brutal and for the most part shows  no mercy. It's understandable your girlfriend loves her father, but I'm pretty sure her father would not want her and you to make the sacrifice that will come out of this situation. Life is hard enough as it is. I've got to give you kudos for being there for her. Your a good man.  Good luck, I wish you guys well

Bill_2001

Kudos to you for being there for your girlfriend and her dad. That being said.....

This disease is miserable, and can easily swallow up a decade of your life being a caregiver. I am taking care of my wife with dementia, and have spent my entire 50s doing so. I would not have it any other way, but I have sacrificed freedom, traveling, friendships, hobbies, career advancement, and more for nearly seven years.

And there is no end in sight.

I have spoken to people that have multiple family members helping out, taking turns, and that seems to work much better. It is the solo caregivers that suffer endlessly. Try not to become one of them.

I am blessed that I can still work, with the help of an adult day care center. But I pay them half my salary to do so, and at the end of the day, she is with me and I have to watch her every second. This disease only progresses downhill. Tomorrow will be worse than today.

Don't be too harsh on his sister that took care of him for 2 years and quit. This is a hard road - there are many people that would not last one month. Not a day goes by that I don't try to figure out how to "just be done with the situation." Alas, there just is no one else to step in and help me. I have postponed life - trips, career advancement, even surgery - simply because my dear wife cannot be alone for one minute.

There is a reason why caregivers are invisible. Most people do not know they exist until they fall into it.

Please learn all you can about this disease. It is much more than forgotten birthdays and names. Read "The 36 Hour Day." Enlist all the help you can get. I cannot even imagine doing this at your age. Your 20s should carefree and fancy free.

If you have not already done so, call the Alzheimer's Association for advice. 1-800-272-3900.
 

Phoenix1966

As has been mentioned above, please seek out the advice/services of a CELA. Many will often offer a one hour consultation for free. Take advantage of that and find out what options your dad and his financial situation might accommodate.

Having been a caregiver 24/7 for a PWD, I have walked that road your GF’s aunt has. Don’t be too disappointed that she “only” lasted 2 years taking care of your GF’s father. It is exhausting, thankless, soul-draining work that doesn’t let up. But if she and the brother feel they cannot continue (or step up in the latter’s case), consider placement and potentially having APS/your state pursue guardianship if there are no financial assets to speak of. 

I am fairly sure if your GF’s father was healthier, he would not want her burdened with this. Her life(and yours) is just beginning and it is okay to want to live that life.