Hello everyone.
My father has Lewy Body Dementia and Parkinsons for the last two years. I made the difficult decision to leave my job and girlfriend to move closer to him. Unfortunately things are starting to spiral out of control and my plan to be around him has now turned into me becoming a caregiver. The latter is due to my stepmother giving up, she was also being verbally abusive according my father's best friend and recently sold their house. She basically told my dad a month ago that she cannot see this disease nor even be around it. She bought a new place and told my father he cannot live there. She gave him no choice but to go to a home or force my sister and I to take over care. Due to COVID outbreaks occurring everywhere, I felt the need to try and undertake this difficult caregiver role.
I guess I am posting because I am looking for some support. I am overwhelmed right now and the social isolation from COVID is really affecting me. I am really struggling because I never really had a relationship with my father and find myself now living on a remote island doing my best to help. I am away from friends but luckily my sister's near by. I honestly never thought I would be 37 and living with one of my parents again. I am thankful for the time I get to spend with him walking and meditating. I am also really thankful for the checklists and great articles on this site but having a hard time myself adjusting to this huge life change. I feel angry at my step mother and anxious around my father. It is definitely hard to watch my dad shake and struggle to find words.
I am not sure what I am really looking for here and maybe just need to vent since my life feels literally upside down.
Wishing everyone good health in these strange times.
Regards.
Evan
I can already feel a bit of the toll it has taken and it's only been a short period. Respite and caring for myself will need to be a new priority from what i've read so far. As for work, I should have something in late January which will allow me to do it from home. My dad still has some cognitive abilities just struggles to find words especially when stressed. I've been talking to my sister however about bringing in someone to help in the future. My stepmother is the POA and my sister should be the alternate. We are currently looking into this now with a lawyer. We have requested that my step mother relinquish it after the sale of the house due to her recent steps to leave my father in his time of need. Again, I hold quite a bit of anger towards her. Never realized "for better or for worst, in sickness and in health" gets thrown out upon the diagnosis of LBD. My dad did not want to leave and requested that a care worker be brought into their home. Again, he still has some cognitive abilities but she just gave up.
Thanks again for taking the time to write back. It is much appreciated.
Regards.
Evan
According to your profile, your father is 70 years old. Realize that he can easily live another 20 years which will eat up 2 more decades of YOUR life. What do you know about LBD and caring for an elder who's suffering from it? There is A LOT involved in caring for someone with this affliction, as your stepmother likely discovered, and probably why she decided to take off. Plus, you haven't had a long, loving relationship with your father, and have now left your job, your girlfriend & your entire LIFE to become his caregiver.
I think you bit off more than you can chew, honestly. It's more than MOST people can chew, because LBD is one of the toughest dementias to deal with. Read up about it, if you haven't already. Then look into Memory Care facilities in the area that have experience dealing with LBD and who are accepting new residents at this time. PLENTY of ALs ARE accepting new residents, and simply have quarantine rules in effect for 14 days upon entry.
As your father progresses down this road, he can become quite unmanageable, and you can become quite resentful of all that will be expected of you. That's not to say you 'shouldn't' do this...............just think long and hard about what you're taking on, and the cost to YOU. Please read up about Lewy Body Dementia, which is what Robin Williams had, and why he took his own life, before you make any firm decisions, ok?
Here is a link about the disease from the Mayo Clinic site; one of many you can refer to for information:
https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025
You will always get lots of support here, no matter what you decide to do. We're all in the same boat with caring for elders in one capacity or another. Some of us do it in home, while others do it from afar while their loved one is in Assisted Living or Skilled Nursing.
There is also a great thread on the subject:
https://www.agingcare.com/discussions/facility-or-home-care-misguided-guilt-should-not-cause-anyone-to-make-the-wrong-decision-463157.htm
Take a look at the great discussion on home care vs. facility care, and see what you think.
Again, welcome! I wish you the best of luck with all you have on your plate.
Bit off more that I can chew? I guess only time will tell. You're right though when you said giving up my life because that is exactly how it feels at the moment. That being said, I do consulting work through my business so the ability to take a break and move closer felt like the right thing to do in May of this year when I witness the extent of his deterioration. Little did I know how crazy things were going to quickly change. I was blindsided by my stepmother and disgusted by her behaviour when I found out she was being verbally abusive towards him. Being a care giver was the last thing on my mind when moving out here to be close to him. It just ended up this way.
What's done is done for the time being. I am now living with him and not going to turn back at this time. His cognitive abilities are still slightly there and I guess you can say that I am selfish. I will never really had the relationship that I want with my father but at the same time feel that at least I won't have regrets in the end. I know now that the next little while is going to be difficult and never thought I would post on a forum to get support. Which I really appreciate by the way and grateful to have found this place! :-)
Is it unrealistic for me to think that I can be a caregiver for at least the next year? I should be able to bring in enough cash through contracting to afford a skilled nurse to help out when needed and when things progressively get worst. My fear is more around the psychological toll that I've been reading by other wonderful people on this forum. I've been heavily reliant on meditation and exercise in the last couple of week and wonder how others manage without burning out or becoming depressed.
Thanks again for listening to me rant and vent. Always amazes me to see that good people still exist that help strangers in their time of need.
I understand that you're doing this in the short term, but is a romantic partner, kids, etc. in your life plan for the long-term?
To be blunt, it's extraordinarily difficult to even establish a normal dating relationship under these circumstances.
Thinking of him is heroic, but so is thinking of yourself.
All joking aside, I have selfish reasons for why I am doing this which I mentioned when responding to someone else. I am also committed for now and will take it day by day. I have my sister to lean on for respite and lucky to be in a high demand field that will allow me to pay for care if need be. Working the latter into a relationship will however require a tactful approach which will be very interesting.
Whew! You have your hands full. My mom has Parkinson’s disease. It’s tough.
As you know, it is a progressive disease without a cure.
I took care of my mom for many years. I know how you feel. It’s emotionally and physically draining.
You sound like an incredible son. As time goes by it does get harder.
There is a poster on this site who is a former nurse. Her name is Alva.
Her brother had your dad’s condition, Parkinson’s disease with dementia. My mom does not have dementia.
I hope she sees your post because she has a lot of knowledge on this topic.
Best wishes to you and your dad.
How long had she and your father been married?
The thing is. Your father was diagnosed with LBD and Parkinson's two years ago; but the changes in him and the challenges of living with him probably began considerably before then, and they can be horrendous. While this was happening she couldn't have known the clinical reasons behind them, so she couldn't have understood what was happening to him, and altogether she probably got quite badly burned by the experience.
What did you think of their relationship before she upped and left?
What does your father think about this?
As for what my father thinks about this, he is sad. He does not want to be apart from her nor did he want the house to be sold. He wanted a care worker to help her which would allow him to be at home. Unfortunately the latter is not possible because she is unwilling and he just wants her to be happy. This means going with the flow as he does not want to be in a home but around family. He also really likes that my sister is only 10 minutes away and they have an amazing bond. I don't think it is easy for him and quite a big transition to move in with me but he realizes the alternative is not what he wants. I am also a really good person. I rarely get upset and been very supportive with him. I am simply doing my best now to be a good son but obviously there is a mental cost which I am working on.
You have come to the right place for support. Caregiving, as you are discovering can be very overwhelming, no ifs ands or buts. But it can also be very rewarding, especially when you're doing it for someone you love. It sounds like your relationship with your dad has been rocky, but it's obvious you love him a lot, and this time spent with him will give you both time to heal from any past wounds, and grow even closer.
And you have also discovered that taking care of yourself has to be top priority as well. So keep on walking and meditating, but also make sure that you are spending time with friends for lunch or supper, or whatever else you enjoy doing. That will be of utmost importance if you want to continue on this journey.
You father, having Lewy Body Dementia and Parkinson's, as you know, will only continue to get worse, and he will require more care than perhaps you can provide, so just make the most of the time you have together now. God bless you for stepping up, when you really didn't have to. You will be rewarded some day.
It's the "remote island" part that worries me. How remote? - specifically, how remote from good, comprehensive services and amenities and things like nursing and care agencies???