My mother just did a 180 into dementia a little over two weeks ago. We believe she has vascular dementia caused by chronic heart failure, and that she has slowly been suffering from dementia-like symptoms, but has been able to hide them. However, two weeks ago, she took a massive downhill slide.
I am an only child, and we lost my father about six years ago when I was five months pregnant. It was a very hard loss, and my mother slipped into a deep depression, but remained functional.
She started having chronic heart failure about two years ago, but things took a turn for the worst about a month ago when her ejection fraction fell between 15 to 20 percent. And the past two weeks have been a nightmare I can't seem to wake up from.
She and I are very close and always have been. Even as a teenager, I reserved Saturdays as our day to spend time together as our weekly ritual, and that has continued for more than 20 years.
Because of her heart problems, my mother is chronically tired, so I usually call her every morning around 9 to make sure she is up and about and feeling okay.
Three mondays ago, I called as usual, but got no answer. I tried not to panic, but after an hour I decided to run to her house to make sure her car was gone (thinking that would give me peace of mind -- that she was out and about, and had just forgotten her cell phone). But, when I got there, her car was in the garage. Long story short, the paramedics had to come and break her door down.
They found her on the floor of the bathroom convinced a man was in front of her holding her hostage. Apparently she had been having this hallucination for several hours....
I found out in the days following, she thought I was helping this man. To make matters worse, she was also convinced I was torturing her small dog the whole time as well.
They found nothing wrong with her at the hospital, so they released her. I convinced her to stay at my home over the next couple of nights because I was hoping she was just having horrific nightmares, and having someone to watch over her would ease her mind.
Over the next few nights she had fitful sleep, and even awoke at three in the morning screaming the most awful scream I've ever heard; I'm afraid that sound will haunt me for the rest of my days...
To make a very long story short, we have been in and out of hospitals for the past two weeks.
My mother's delusions are becoming more and more frequent and hurtful. I and my husband have become her targets. She won't let me see her because she thinks I am out to hurt her. She has even gone as far as to beg her friends to please tell the FBI that if anything happens to her, I'm the one who "did it."
She is also acussing me of stealing jewelry. One piece of which she lost two years ago herself and made a claim through her insurance and got reimbursed.
I have now gone for over a week without seeing her -- a woman I've never gone more than one day seeing, unless I was away on a business trip.
And I haven't been able to tell her I love her without her hanging up on me.
The doctors tell me that she has probably been having a series of small vessel strokes all along and That they are finally taking their toll. They cant be sure because they cant do an MRI due to her difibrillator/pacemaker.
She has been lucky enough to have a few girlfriends who have dropped everything to come and stay with her, but they have to go back to their families soon. And they are telling me there is no way she can live on her own. They are also flabbergasted because they say the woman they know was totally devoted to her daughter and loved me unconditionally, so her adamance about me trying to do her harm is unbelievable.
I am so heartbroken. I feel like I lost my mother (not to mention my best friend), and she has been replaced by a vicious woman who only looks like her.
I am embarassed to relay all the cruel things she has spewed at me; things she knows are my worst thoughts I have about myself. These are the very same things she used to try to convince me weren't true.
I'm getting so beat up and shut out, that I'm just about ready to give up. But I'm afraid if I don't keep trying, she will be lost forever -- as well as all the happy memories I have of our past. I can't help but feel there is a tiny grain of the truth of how she feels about me in every hurtful thing she says about me now, and it's affecting my memories of our past together.
I'm about to leave her to her own devices. God forgive me. But she won't admit herself for psychiatric evaluation, and the doctors say their hands are tied unless I sign an affidavit to have her commited. And I'm afraid if I do that, she will believe that she is justified in thinking I've been out to get her.
Any words of wisdom?
Don't despair. This is a marathon, for sure.
A UTI was the first place my mind went to and have had her checked for it all three times she's been to the hospital. Every test came back negative.
We have had a meeting planned with a cardiologist that specializes in sleep studies planned for over a month. She was very excited about it because she was hoping that it would bring an end to the horrific nightmares she is plagued with. Her appointment was yesterday and she would not let me take her. She was also very mad that I had called to remind her about it because, "[she's] not crazy; nor stupid."
Well, I called last night to see how the appointment went, and she told me she was in the middle of something and would have to call me back. So, I called her best friend to see if she knew anything. And, low and behold, was told that my mom ended up not going because "she didn't feel like it."
This makes me wonder if she "feels like" taking the 15 different medications for her blood pressure, heart problems, choloesterol, diabetes, etc. ... I am so worried but at a loss because I am being allowed no access.
It hurt. It hurt bad.
There were times I wanted to throw my hands up and walk away, for sure. There were private tearful sessions with my sister and days when I felt like the knot in my stomach had moved in permanently. But what kept me from running for hills was the understanding that the dementia generated this "personality" of my mother's and she was as helpless to stem the flow as she would be if it was an actual tumor growing in her body. With dementia there's no magic pill, no treatment plan, no step-by-step process that you can count on to get your mama back. But it's still Mama. She'd be in the middle of a tirade - eyes glaring, teeth gritted, insults being flung - and I'd look at her face and think "this is the woman who changed my diapers, taught me to read and held me through the night when I had chicken pox." Broke my heart. But it also kept me in the fight to make her life the best it could be - even if she couldn't see or understand that I had her best interests in my heart. I knew - that's what mattered.
Take a step back. Give yourself time and space to have a good cry. Then step back up to the plate and keep trying. If she won't see you - work behind the scenes with the doctors. If she's afraid of you - send flowers with a loving note. Drop off comfy jammies at the hospital. Talk to the social worker at the hospital or her doctor or elder care agency about further tests or AL options. Have her committed if that's the only option until further tests have been made. She would do the same for you if the roles were reversed.
My parents and I were never close. Even so, I still get hurt when my dad says hurtful words. Fortunately, it has calmed down a bit.. I know that I need to get a thicker skin but it's hard at times. I have noticed that when I'm happy or satisfied with my life, my dad's words doesn't hurt me much. I'm able to shrug it off. When I'm tired, irritated or depress - I over react from his words.
As Trying says, hang on tight to the lifetime of love and good memories. And get her checked out for a UTI.
Checking her in for a geriatric psychiatric evaluation (if there is no uti) is not only necessary, it is the loving thing to do. Her brain is in some way diseased, and the brain is an organ like any other. If her heart were damaged, there would be no question that that she needed a cardiologist. So if her brain is involved and making her mind play tricks on her, a psychiatrist is the doctor she needs to see.
This is NOT betrayal; it's the medical care she needs and deserves.
As for leaving your mom alone, you saw what happened. Her friends told you that she's no longer able to live by herself. Are you able to find a social worker that accepts your mom's insurance? You can check her insurance or her clinic, (My parents' insurance and their clinic has home care coverage - which includes a social worker from that clinic.)
Separating the disease from the person is very hard, but necessary. There are times (fewer now) when my mother will say "I love you dearly", or "I'm sorry I am so nasty to you" and "dont' pay any attention to me". My guess is that she says these things when she is "back again", which happens in early stages. Take heart in knowing that your Mom's soul is still there and that on that level she always loved you and still does. She is ill with something that has affected her brain. I know about those bad experiences that you feel will forever be implanted in your brain. What I am trying to do is to replace them with the times (I get mental pictures) of when she looked well, smiled, when we hugged, the good times. I It is so hard to write this as your post has really touched me. What I am saying (and have a hard time doing) is to try to remember the lifetime of love and sharing the two of your had. Please feel free to private message me if you want to talk more. I could sure use the support. this is one tough illness.
But betrayal? Only by the disease. There are physical changes in your mother's brain. She has no control over that. She is no longer the woman you recognize because of the damage in her brain. She is not deliberately betraying you. Really. It sounds like her brain is stuck on "what is the worst possible thing that could happen to me?" and the answer is to have you turn against her and somehow she has a delusion that that must be what has happened (because her life seems to be the worst that it can be).
That woman who is your best friend is still there. She is just overwhelmed right now. Grain of truth in what she is spewing now? Why would you consider what she is saying with a very damaged brain to be more "real" than what she has said and what you have experienced all your life? She is delusional!!
It is certainly true that a person with dementia cannot live alone. Her friends are right. So what will happen when they go home? If you leave her to her own devices I suppose she will eventually become a ward of the state. And maybe that is the best you can do. Or maybe it would be better if you try to determine what would be best for her and try to make it happen. She already thinks you're out to get her. She doesn't need to have evidence for her delusions, so how much worse could you make it?
This has been extremely sudden for you and I'll bet you are operating in a state of shock. Give yourself some adjustment time. See a counselor if you can't shake the feeling of being "betrayed." See a lawyer who specializes in Elder Law to discover what your options are to get good care for your mother. Read up on vascular dementia.
(BTW, has she been checked recently for a uti? That can cause extreme behavioral symptoms.)
No matter how this unfolds, you never need to give up the lifetime of memories you have built with your best friend. Those are yours forever.
Keep us updated. We care.