Hello. I am Jordan, 23 years old from Bulgaria. I would like to get advice from people with experience on whether or not it is a good idea to become a full time caregiver for my father.
My father was diagnosed with Multiple Sclerosis in 1997. He has been heavily immobilized since the early 2000s and has gotten worse since then. My mother and I took care of him until Aug. of last year, when she had a stroke and passed away in Sep.
Ever since then, I have been the primary caregiver for my father. Currently, he is heavily immobilized, he cannot move his limbs or sit straight in a chair, and he is also very spastic. Being spastic in our case means that his arm and leg muscles tend to have spasms, during which a certain muscle group contracts very strongly and in result, his limbs lock up in in a certain position for several seconds — the legs tend to lock up straight and the arms tend hug his body. Apart from that, it is very tricky and physically demanding to put his body in a comfortable position, so that he is not experiencing pain and discomfort.
People with MS tend to get extremely sensitive towards touch, contact, sound and light. Even the slightest touches, noises or exposures to bright lights brings them pain, discomfort, and can even cause spasms. Many people don't know that and assume that my father is too capricious.
Ever since my mom had a stroke, I've been looking for a caregiver to take care of him while I am at work. The problem is that the caregivers are usually incapable of providing adequate help, or he needs to make a lot of compromises with his positioning mainly, but also with his hygiene. In general we have two options: hire a 24/7 caretaker who lives at home or hire a caretaker for several hours a day.
The price to hire a 24/7 caretaker is the best compared to the rest of the options, but the service is very subpar. I have invited 5 people to care for him 24/7. All of them either gave up or were "fired" by me mainly because they couldn't deal with the transfers (we use an electric patient lift).
The other option is to hire a caregiver for several hours, but those people make as much money as I do. The better caregivers go to work in several different places every day, for short periods of time, because the shorter the work hours they work, the higher the hourly wage they get. This forces me to pay them higher hourly wages just to keep them around.
On top of it, only 3 of the 15 or so caregivers whom I have hired or simply interviewed are somewhat capable, and even those can't be trusted to put my father on a toilet, chair, or in bed properly, so that he is not in pain or discomfort. They also skimp on hygiene procedures and bathing is out of the question with them.
As for me, I work as a Junior Software Developer, but despite the title my wage can only cover the expenses for hiring caretakers. It is barely enough to cover the time while I am at work, let alone the time I need to get groceries, do administrative work etc. My father can stay alone, but as you may know, people like him, in general, should not stay in a single position for more than 2 hours.
On the surface, it seems like the better thing to do is to keep my job. By doing that I may be able to hire good caretakers for longer periods of time as my salary grows and also, I won't drop from the workforce, which, if it happens, may interfere with my future career prospects.
But there are many drawbacks to this:
I find that incredibly irresponsible and selfish.
Best of luck figuring out the care situation.
You indicate you are from Bulgaria, however you do not clarify your current residence. This is important for us to know in terms of how to respond to you.
Without this information, I would say:
* Always keep your job. You need the benefits, experience, etc. You are still so young.
- You need to keep up with the changes in your field as often the learning curve of new information/technology is steep and you do not want to be left behind - leaving for 1-2-3 years can make a lot of difference.
* Depends on if your dad owns his home / is an asset.
* As mentioned by an/other/s, I sense your dad would be better served in a Assisted Living facility.
- Start to research and visit.
- Know your dad will continue to decline and at some point, you will not be able to care for him - and then if you quit your job, you won't have a job either.
* See if your dad can avail himself to any government assistance.
* Contact the MS Association for support / information.
* Most caregivers are limited in their scope of care. Many have to do this kind of work due to a lack of education in another field; some do not care; a few or more do and will do their best. However, this is a very 'difficult' caregiver position / job requirements. You already know it will be a revolving door of caregivers.
- This revolving door is ALSO very hard on you interviewing, verifying references and work experience. Additionally, you are either paying an agency or hiring direct (Ind caregiver) so you may need to deal with taxes / payments, too.
Realize that you cannot do it all as you seem to feel you are charged with -
- Is there anyone else in the family that helps ? your mother ? silbings ?
- If you allow yourself to burn out - and you will - who will be there to take care of your dad? (No one most likely.).
DO NOT WAIT UNTIL YOU ARE FORCED TO MAKE A DECISION RE PLACEMENT / CARE (FACILITY). Do it now while you can - with your job - and getting caregivers 'piecemeal' as needed.
If your dad has a home and can sell it, you / he will have income for care in a facility. If he doesn't, he may need to go into a nursing home.
- Much depends on is residence. USA or Bulgaria. As things are going now in the good ole USA, he might be better off in Bulgaria - we do not know how this current administration is going to proceed with caring for elders, disabled, the rest of us.
Keep us informed of how you are doing.
In the interim, I would encourage you to find volunteers or 'helpers' through local churches, neighbors - to do what they can to lessen your burden. And, while you love your dad, it is a huge burden on you. You cannot do it all.
Gena / Touch Matters
I live in the U.S.A. but I found information online that might be helpful to you.
The MS Foundation Bulgaria offers resources and support for individuals affected by MS. They may provide guidance on available care options and connect families with relevant services. Contact details:
Phone: +359 244 20 204
Email: fondacia@msobg.org
Website: EMSP.ORG
I understand it is essential to also discuss your father’s care with healthcare providers familiar with MS care in Bulgaria. They can offer insights into available services, potential treatments, and strategies to manage MS symptoms effectively.
I hope these alternatives will help in providing the necessary support for your father.
We have no idea what resources are available in Bulgaria, and that is what you should be finding out locally.
In-home care is normally more expensive than a NH, where staffing can be shared between people and varied depending on needs at different times of the day. Check locally for options like that.
I just can't stand it when caregivers cannot put my dad to sit or lie on the bed without him suffering from pain and discomfort, especially when I know that it is possible and I can do it. The caregivers are very expensive but they are usually women over 45, usually around 50-65 who sometimes have a lot of years of experience in caregiving, ideally in some wealthier country like Germany, England, Italy or Greece and now they are older, have traumas and don't like to push themselves. This is why I have talked to and have invited a lot of caregivers in my home but many of them are simply put useless due to lack of physical abilities and sometimes intelligence.
And since only handful of caregivers can actually do the job I am worried what is going to happen when a caregiver decides to stop providing services for one reason or another. I have to start the whole searching process again plus, the fact that I will have to educate her. Those caregivers get a lot of my time, energy and money for almost no benefit at all until now.
In general it is obvious that I need help, but currently I am not getting a second hand but rather I pay someone large sums to do the things that I would do myself and do better. The only thing that the caregivers are sometimes better at, but not always, is cooking. The benefit from going to work is that perhaps in the future I may be able to save money and that I won't interrupt my career which may be a dangerous decision if I decide to follow this career path (programmers who stop working for years tend to not get invited on job interviews).
The house is in good condition currently but I'd like to have time to do maintenance when needed because houses tend to require a lot of maintenance. We also have a big yard with a lot of grass that can grow very quickly if the summer is rainy.
You are only 23 years old and have your whole life ahead of you, and I can't imagine any parent regardless what country they're from wanting their child to give up their life for them.
So again... your father needs to be placed in the appropriate facility now, and you need to get back to work.
I wish you well in finding the right facility for your father.
I know that he needs 24/7 care, which is why am considering if, dropping the load of having to go to work on top of everything is a good idea.
Are you able to take all of this on all by yourself? I don't think you can. You also have to save for your future, also. Quitting your job doesn't sound like an option, imo.