New to the board - Need to vent -long read

Graygirl1

My mom has come to live with me temporarily until we can find a more permanent solution. We lost my Dad, her husband and my brother within a month of each other. I have another sibling who chooses not to be involved and I am left holding the bag. The original agreement was that we would take mom (who is diagnosed with Lewy Body Dementia) for a couple of weeks at a time.  Now I have full care of her, including her medical appointments and running the home she shared with my Dad -which she refuses to return to. 

She has begun to affect the environment of my home. My husband will no longer be on the same level of the house with her let alone the same room. In one of her "moments" she threatened to "call the cops" because she said he was trying to look intimidating. He was just standing at the kitchen island eating a snack. If she hears us talking or laughing in our bedroom she bangs on the door claiming to need assistance. 

My life has changed and I haven't really had the time to grieve the loss of my brother, my dad or my former life. I have a lot on my plate.

 I resent her a hold her responsible for my dad's decline. He had a fall and could not get up or dial the phone because he was blind. She refused to dial for help and eventually called 911, 10 hours later. She allowed him to soil himself and lay there without needed medication and food. I found myself dealing with the local police, and social workers from the state and hospital.  Help was just 10 minutes away. My dad cried each time he had to explain to doctors what happened. He never walked again.

 My mom never had to worry about paying bills or handling accounts. That was my Dad's job and when he lost his sight, my brother and I helped. When I try to talk to her about bills she becomes verbally abusive.  She just told me to stay off her property.

It's all too much, but I know this is my life. I eventually will need to to become a conservator.

Don't know where to start. This is my story.

Marta

How devastating is your situation. 

You are of course allowed to feel resentful, but please recognize that your mom’s brain is broken. She can no longer reason or behave appropriately. She may not have recognized that your father was in trouble- that is a feature of the dementias. The PWD cannot recognize danger or act on it.  Please know that I am not discounting your feelings, but hope that with time you may forgive your mother. 

It sounds like her presence in your household is not going to be good for anyone involved.  Do you have POA for your mom so that her house can be sold and she can be placed in an appropriate facility? 

harshedbuzz

Hi Graygirl and welcome.

Please accept my sympathies on the passing of your dad and brother. That, along with 24/7 responsibility for a PWD is a lot to be processing.

Do you have a POA to make decisions on her behalf? If not, now would be the time to consult a CELA about making this/conservatorship or guardianship happen asap. I know it's a lot to do at once, but in some respects you are ahead of the game already being aware of your parents' financials. It's generally not a good idea to discuss, consult, reason with or ask permission around IADLs with a person who has dementia. In your shoes, I would take care of the financial stuff without her input. 

Despite your dad's blindness, he likely provided a lot of scaffolding and support to your mom. She may seem more impaired than you knew until he passed. I would make plans around her as she is now. That may mean a consult with a geriatric psychiatrist to help manage her outbursts or it might mean placement. 

It's best to understand that your mom's brain was damaged and that she can not be held responsible for her inability to appreciate the gravity of your dad's fall. The PDF 12 pt Understanding the Dementia Experience (dementiacarestrategies.com)
might help you get to that place. I know it isn't easy. My own mom developed an autoimmune liver failure the last winter they spent in FL. I called daily to check in and he told me she was napping, or she was lazy and wouldn't fix dinner, or that they were divorcing because she didn't love him anymore. At no point did he mention that she was the color of a school bus. Had a neighbor not happened upon her with dad frog-marching her through Publix to buy groceries and driven her to the ER, she would have died. Fortunately, she named me as an emergency contact and the hospital called me. I flew down, spent the day in the hospital with her and then drove to their home where dad was hosting neighborhood happy hour wearing nothing but a bath towel. 

HB

Graygirl1

Thank you for taking the time to reply. I need to move forward with a POA but she needs to give permission. A conservator role may be more appropriate but it would be involuntary as she would not consent to that either. I will have no choice but to go through probate court.

Mcovington

My mom is 98 years old and has been living with me for about 24 years. She has not been formally diagnosed with dementia but in reviewing the stages she is at stage 6. It has been difficult for me the pass 5-7 years as her condition worsens. She is up all hours of the night talking, singing, praying, screaming and so on. She walks with a walker but can't walk long distances as she is terrified of walking. I have a commode next to her bed, one minute she can go on her on and the next she doesn't have a clue and goes on the floor. She had this loud whine to wake me. I haven't had a full nights sleep in years. If she is hospitalized I have to stay at the hospital the whole time because she screams and is physically combative. I have to help her bathe, put her clothes own, help her out of the chair and help her on/off the toilet.  Now she is starting to forget how to use a spoon to feed herself so she mostly eats with her hands and has food everywhere. I am divorced and live alone with my mom. My son is away at college. I have a brother who doesn't help at all. I asked him could he take her for awhile and he said he can't take care of her. She has fallen three times this month and I've had to call someone to help me get her up. Oh did I say she calls me names, threatens to kill me or call the police on me (not worry about any of that though). I am tired! I feel alone and isolated. I can't even leave the room without her yelling for me. So mostly I have to sit where she can see me. I am considering moving her to a dementia/memory care facility, even though my brother is against it. He feels that she will immediately die, he thinks she'll be disruptive and he doesn't trust that she'll get the proper care. I have guilt for wanting to do this but isn't my mental and physical health important. I was hospitalized in November 2020 for stomach ulcers.  I don't have a power of attorney or anything, do I need that to put her in a facility?  Like I said she has been with me for 24 years and has no assets to dispose of.

Graygirl1

Thank you very much for the article. I found it to be helpful. It has helped me change my attitude.

Graygirl1

Marta,

It's a process that I am going through. My dad told me he begged her over and over again for her to call family. She has called us all for less, such as take out. It was such a traumatic event because in the days following I was questioned by doctors, police, crisis intervention workers who came out to the house to inspect it and analyze her. 

Yes her brain doesn't function normally but it's difficult to move past it. 

Thank you for taking the time to read and respond to my post.