A Daughter of Parkinson's

A daughter caring for a mom with Parkinson's

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Ethical dilemmas

When caregiving during the end of life one will face many challenges, including many ethical ones. As your loved one loses the ability to care for themselves, make decisions for themselves and their cognitive abilities it means you will have to step in more and more. The decisions that are made next are important. My current situation with my mother is a great example. She is in end stage…

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Pre Death Greif

Physical death doesn’t have to happen for us to experience greif. The expectation of death can be enough, or losing who the person was is enough. When someone is in hospice we know there is a timeframe and window for their life. We don’t know how big or small that window will be, but we do know it will end at some point. This knowing can cause many of us to pre grieve even if we don’t want to.…

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PARKINSON'S Psychosis and Delusions

This development, that doesn’t happen to everyone, is not discussed nearly enough. Maybe because it doesn’t happen to everyone, or it happens in various degrees. My mom has an overlapping diagnosis that predisposes her to more severe psychosis. She was already taking Seroquel for a mild hallucination and possible delusions, so it would make sense that would intensify as Parkinson’s…

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Putting life on hold

I’ve made a choice to do this and to help my parents because I wouldn’t have it any other way. I also have had different hopes and plans for my life. Currently my life is about them, and really only them. I do not even remotely have the life I would like nor am I able to pursue what I want out of life. Let me share with you what I have wanted out of life for a very long time. I want a small…

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Caregiver Fatigue and Emotions

This is a hard one to admit, and likely the biggest reason I am ANONYMOUS and will not share this blog openly with anyone I know. I feel terrible for having these emotions. I am only at my parents 5-6 hours a day but it feels like more. The emotional and mental drain lately of going over every day trying to support her in her various delusions, stress and hallucinations is so draining. Half the…

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Survival Instinct: Not wanting to die and stubbornness

We are all fed this idea that when we or someone nears the INEVITABLE end of our lives that we accept the end and are at peace. When in reality a good majority of us don’t want to die, maybe notice we are dying and fight against it with everything we have left. It is not peaceful or pretty or easy. There are plenty of people not ready to leave life behind. My mom has been trying to will her…

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Home versus facility

I have a history with this and have a strong opinion people should be allowed and supported in staying home. With that said, recent events haVE had me considering the reality we may not be able to manage my mom’s care at home. If her psychosis can not be managed it makes her care, and her stress levels, very difficult. Difficult to the point that I wonder if she might be less stressed at a care…

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Continued advocacy

Medical field advocacy is exhausting. I’ve been fighting and dealing with the challenges since day one and we are in month nine? There are three doctors that do not talk or communicate, many times want to push off issues to someone else and only after 7 months of my mom being in hospice did she actually get a consistent team of nurses. I have to request urinalysis to watch for UTi’s, the doctors…

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“Remission” then Psychosis and Delusions

I hadn’t posted in a long while because for the most part things had STABILIZED. My mom wasn’t great but she wasn’t getting worse. She was able to spend some good quality time with her husband, my dad (the other caregiver). Things were… Okay. It actually made me start to think how long we would be caring for her. That will be another post. The mild confusion crept in slowly. It wasn’t bad or…

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Everyday Anxiety

I show up to my parent’s place almost every day, we have a schedule somewhat set. I never know what I am walking into. I’ve talked a lot about my mom’s parkinson’s but not much about the mental health and Bipolar part. She thankfully is mostly sweet and loving, but struggles with depression and anxiety. All of that makes sense without Bipolar as she has lost so many abilities and depends on…

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Words of a mother Part III

My mom has a lot of fight in her. She has stated many times that she wants to be here for my dad and I as long as she can. She wants to get as much time with us as possible, and we want that too. There are bad days where she wants it all to be over, and I can’t blame her. But ultimately she is stubborn and hasn’t given up the fight. I’ve tried to tell her that I am with her to the end, however…

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Self-care and Support

Intellectually we all know self care is important, but actually doing it is something else. I personally try to do self care, I go to the small gym at my apartment, I try to schedule gaming times with my friends, time to talk to them, and activities with a local group. Although it is hard I also try not to go to see my parents everyday. The thing is, it feels like I can’t share everything with…

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Bedsores or Pressure Sores

As a caregiver that has some training in this area, I know what to look for. But when your loved one needs more care and becomes less mobile no one really informs you or advises you on how to avoid the inevitable. Bedsores, or pressure sores, are skin wounds. THey happen when someone lays down most of the day in bed in the same position. How this happens is most beds don’t distribute the weight…

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Words of A Mother Part II

My mom has started to talk about the end and how much she can withstand. She has been sharing a lot about this and goes back and forth a lot about whether she wants to fight and stay or not. I have seen her suicidal and she isn’t that, for the most part she wants to live. She just doesn’t want to live with pain and tremors and the inability to get up and do anything. She sees the decline and…

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Medication Shortage and hospice versus Palliative

It has been emotionally hard seeing my mom having a harder time and there is nothing more I can really do to help. With the current medications she is on she still experiences episodes of uncontrollable tremors, bouts of pain and episodes of anxiety. Last week before the holiday, I submitted normal medication refill requests. I checked up on them this week and one was ready but the anxiety…

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Aspiration Pneumonia Risk

My mom is staying more and more in bed because of discomfort and mobility. This makes the risk of aspiration pneumonia even higher. There are simple rules to follow in order to do your best to avoid this, but nothing is fool proof regardless of where someone eats or drinks. Aspiration Pneumonia is when liquid, food or anything that isn’t air gets into the lungs. It can cause infections that can…

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Hospital Stays and Medicine

Unfortunately we had a situation where my mom had to be rushed to the hospital for what appeared to be a heart attack or heart failure with the symptoms she reported. I have a sheet with her 1. Date of birth 2. Last six of her social security number 3. Allergies 4. All the medicines she is taking, dose, reason why and when for such an occasion. Most people wouldn’t know to do that, but it is like…

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