Student life vs Caregiver life

[studentndaughter]

Hi Guys!

This is my first time ever on a forum so I would definitely appreciate any kind of guidance! So what brings me here...I'm a 23 y/o caregiver to my 51 y/o mother. She's been a PALS for about 4 years now.

There are 6 of us in the family but my little sister and I are the main caregivers. Our dad helps when one of us aren't available. My 2 brothers don't really help because they are busy with their own jobs.

Anyway, I'm currently attempting to get a masters in pharmacology. What was supposed to be a 2 year program for me is now going to take much longer because I have no idea if and when I'll have time to do the research portion of the degree, especially because my sister is moving far for dental school in 2 weeks. My dad is proud of her but has been getting increasingly edgy and angry at her whenever she leaves the house to see friends, I think because he doesn't like the prospects of having to do more as a caregiver.

Anyway the point of me writing all this is because I need advice. I am afraid of what next year will bring. I might have to do 90% of the caregiving and struggle to keep up with studying. I'll rarely see my friends because they live far and I can't be away long since I'll be the only one capable of taking my mom to the bathroom.

I find it so hard to trust homecare nurses because they're the reason my mom had long stays at the hospital. The first time was because the nurse failed to put the bipap (one provided by her own nursing company) on correctly and my mom got so anxious she ended up having a heart attack. The second time the nurse and her nursing company (different from the first one) failed to flush one of my moms catheters and she ended up with MRSA.

I just...I'm having so much trouble dealing with all this because I've always wanted to be independent and with this wretched disease invading our lives, I feel like I've lost that chance. Like how am I even going to be able to find a stable and understanding job that has something to do with my career? Will I even be able to find time to start and finish my research? Can the people around me please step up and help me in caring for my mom so I can have a life too??

I'm sorry for going on and on there's just so much I want to talk about and vent...I don't know where to start...And I've never met or heard about any young caregiver with a similar situation to mine. Mostly I hear of older caregivers of Older PALS and these caregivers already have work experience and a stable job.

 

[WendyWooG]

Oh sweetie big hugs x

I am a pals so I wouldn't usually post on the cals side but I feel I can add something here. I am 50 my youngest daughter is my main daytime carer she is 22.
You deserve and need a life outside caring, I am sure your mum would want that for you.

Can you have a frank discussion with your dad about the need for him to do more so you can have some social or study time in the evenings. My husband and my daughter both work full time. My husband works weekdays my daughter evenings and weekends. This is incredibly tiring for them, my eldest daughter lives a long way away but we have an arrangement, when they are overtired she takes holiday from work and comes down to take over for a few days so they can have a complete break. It's very important they have this time could your brothers step up in this way?

It is scary that you have had such a bad experience with your carers but it's worth persevering to try to find a good one, when you do it will give you so much peace of mind and the time and confidence to build for your future.

You are incredible doing all you do and I really hope your dad and brothers will help out more.

Wendy x

 

[Nuts]

I'm so glad you found this place---you will meet people here in similar situations, I'm sure. Please ask away, vent, or just chat. That's what we are all here for. You are making a huge sacrifice right now, but I don't think you will ever regret caring for your mom. Yes, you need help, and it's time to talk to the rest of the family. I understand not trusting the nurses at this point, but is there a way to help insure they do their jobs? Checklists? Cameras so you can check to see that they are doing what's on the list?

I wish that I had advice about your career. I can only hope that prospective employeers will understand taking time off to care for your mom with ALS. I would certainly provide that information in some manner.

Big hugs,
Becky

 

[Manhattanite]

Hi, I have an idea: what about using social media to call on all your friends and family to pitch in with help? Perhaps posting on Facebook explaining the situation and asking for volunteers to come and assist at home. I know that if one of my friends posted such a plea for help I would offer to come and help even if it was a couple of hours a week.

I think that because this disease completely invades and takes over our private lives, we feel like we are isolated - but thinking creatively and using "group sourcing" can be a tool to solve problems. Good luck!

 

[Angiegal]

Hi.
Just like Wendy I'm a pALS too. The social media thing sounds really good. Another suggestion that I remember reading in another post was to contact the church maybe that your folks go to, people from their walk of life. Just saying I personally would be more receptive to having friends come over to help out then friends of my kid.
Having said that hugs to you and I hope everything goes okay. This is a great place for you to be.

Angie

 

[lgelb]

I agree that it sounds like you need to better leverage/clarify the respective commitments of your dad (does he have other issues?) and whatever nursing hours your mom has access to. If the agency you are working with isn't up to the task, it can be worth the time to find a better one, or to look beyond the agency environment and recruit directly, as many here have done.

Delaying your earning your Master's and beginning your career is a choice that it sounds like you have not fully accepted. You may want to talk with friends and industry contacts, and maybe a third party counselor to clarify your feelings. However, having been in the life sciences for some years (and having left the formal job market for several of them to do caregiving), I think you will find people accepting of the facts of the case and you will succeed based on your merits. Time-outs are not as uncommon as you might think.

Still, it has to be something you want and choose, because you don't want to spend the next year or two in regret or resentment. Maybe it's not fair that you've been dealt this hand and others aren't as concerned with how it affects you, but it's on you to structure things in a manner that works for you and your mom, most of all. We're all here to help virtually however we can but you also need some help "on the ground." Don't be afraid to ask, stress-test, refine your arrangements.

Best,
Laurie

 

[swalker]

Here is a perspective from another PALS.

You are the daughter in a large family. Somehow, a significant and disproportionate burden has been placed on you and you have accepted it.

Take a step back and think about that. There are family dynamics at play here and you are caught up in them.

Why does a daughter have a responsibility to shoulder more of the burden than a son?
Why does one daughter have a responsibility to shoulder more of the burden than another daughter?
And, why does any child have a responsibility to shoulder more of the burden than the spouse?

There is no doubt that ALS imposes a significant burden on the caregivers. But, for the burden to be distributed among the family members as you described is simply wrong.

You have the power to change this. You don't have to accept all the burden.

If you want to accept it, that is your choice.

If you don't want to accept it, then you need to speak up. Talk about it with your other family members. Seek professional counselling (for both you and the rest of your family). Until you make changes, no change will occur.

In reviewing what I wrote, it seems pretty blunt. I don't mean it that way at all. I hope there are some thoughts in here that you can find helpful.

Steve

 

[Narrowminded]

First like Wendy, I am sending huge hugs. It sound like someone really needs to speak with your father. Here's my background.

My Husband, Brian, is the PALS. We have two children, a son 30 who is married and a daughter who will be 23 next week. She took a year off between her undergrad and is heading off to Grad school for a Doct in PT. She has told me she's worried about me being here alone with her father (54). She knows her brother will be here to help. Both can and have completely taken care of their dad. Brian has been trached and vented for 7 years, so DD was just turning 16 when that happened. Both can completely care for the vent and DD has been doing complete bed baths as has DS since the trach time. Both helped prior as well. I have and continue to encourage my DD with her schooling. I don't want her to regret not doing it and I don't want to regret seeing her not happy. As a parent, my priority is seeing my kids succeed and have as normal of life as this dreaded disease will allow. It's path of destruction is incredible. I would think your father would/should want you to have a normal successful life as well.

All that to say, as a girl and a teenager at first, our daughter completely cared for her Dad. So there is no reason on earth that your brothers cannot completely care for you Mom. I'm sure at first she may feel uncomfortable with bathroom help from them, but that is something both she and they need to get over.

There is no reason that you should be the only one who has to put schooling/job on hold. I understand your father may need to work, I get that, I still work as well. However, he should not be playing favorites among his children. Now, saying that, I have to ask if you volunteered to put your schooling aside so your younger sister could do hers?

As others have suggested you need to have a family meeting. If there is a dynamic in your home that the men do the providing and what your doing is "woman's work" then they need to get over that and work it out. Possibly you may need to have the discussion with a counselor in the room to help. You have to stand up for yourself, and you need to do it now. Everyday that you wait will make it much harder. Patterns get established and no one likes to rock the boat.

It sounds like you father doesn't want to do any caregiving if he's mad at your younger sister not being home. If that's the case, then he needs to work to find a caregiver until you find one that works. I understand the struggle, but keep plugging away and find one. When you do, you'll be so relieved and there are gems out there. They can be found. In other threads you will see the suggestion of nursing students, so if you have a school near by, give that a try.

We are here for you 100%. We will laugh with you and cry with you, hug you and hold you up, but we will also give out tough love when needed as well. I sure hope my post didn't come across as harsh, it was not my intention. It's just I've been at this so long (just about 13 years), I don't want to see anyone - young or old - end up a hostage to this disease.

Take care and hugs,

Sue

 

[soonerwife]

So sorry to hear about your mom and your situation. You have gotten some great advice. I hope you can work some things out.. They are right, all the care should not fall on your shoulders alone.

 

[Lkaibel]

You are obviously a wonderful daughter who needs a lot more help. lots of good advice here.

 

[studentndaughter]

I can't even tell you the amount of times I've tried to have a frank discussion with my Dad or with the rest of my family, especially on the topic of adjusting without my sister around. I come from a family where the idea is that wives and daughters do the caring. Those ideas are what my dad were raised on and he's very prideful of everything to do with how he was raised and who he was raised by. He used to be a pretty chill guy unless we did something wrong/rude. But after my mom's illness forcing him to do things like, retire or cook, he's become an increasingly edgy person. If he yells at me I can't even put a word in to explain myself because to everyone in the house, that's rude. I hate it. It's the same with any man in my family tbh. Anyway, I tried telling him to do more but he brushes it off and everyone else says "why should he? he's your dad, respect him" I didn't realize defending myself was disrespectful haha. It's not like my dad doesn't do anything - He's had to retire and he does keep her company, he even makes her feed from scratch. But I need him to do a little more than he does and it's hard to get him to do that.

@narrowminded As for my brothers helping my mom in the bathroom. She's already embarrassed about having to be in the bathroom with my sis, my dad, and I, she would never have my brothers in that business of hers. Since my dad has retired majority of the household expenses have fallen on the shoulders of my oldest brother, so I don't expect him to help more than he does. I think my other brother could at least sit with my mom and suction her trach when he's not traveling and I need to study.

@Nuts Yea we could install cameras, that's a good idea! We're at our 3rd or 4th nursing company now ugh. It sucks that insurance companies require nurses to do all these paperwork while on the job. We had some nurses that would majority of the time focus on that instead of on my mom, so even with the nurse we would still have to keep an eye on my mom in case she needed suction. They literally write paragraphs. The last nurse we had was probably the best because she paid so much attention to my mom and entertained her, kept her mind off her disease. Unfortunately she got injured while on another case and the nursing company fired her. We just got a new nurse and she seems fine so far. And the insurance company only gives us 16 hours/week, which is definitely not going to be enough after my sister leaves.

@Manhattanite That would be an awesome idea but my mom doesn't like help from people outside the fam, who isn't her nurse. Plus they wouldn't be able to take her to the bathroom, which the main thing we need help on. Her bathroom breaks are what keep me from doing things outside the home for long periods of time. I think that because this disease completely invades and takes over our private lives, we feel like we are isolated - but thinking creatively and using "group sourcing" can be a tool to solve." I so agree! She does get visits from a lot of her friends occasionally which does cheer her up a bunch

@lgelb and @narrowminded I'm definitely not perfect, you're right lgelb I haven't fully accepted delaying my masters or career. I have accepted it but there are days that I think about it and I get mad about the unfairness. I especially think about it when looking for a part-time job. There are barely any weekend jobs in the science or hospital setting. Currently I'm doing a work-study job at school but that's at limited pay. The nice thing about it is that I can go in whenever I have time and they dont mind me skipping days. But I need a long-term part-time job. The job I have now is as an office aide but I need something more relatable to my career path but is also accommodating to my caregiving responsibilities. I plan on going into pharmaceutical research for a career. No one asked me or wondered how my sisters move to dental school would affect me. My dad, especially, in the beginning was all for having her go away and everyone was like yes go we got it! They didn't think well how would we adjust. I'm the only one who was thinking that in the beginning (while also being super proud of her) and when I voiced the concern, the response from my sis was "that's my problem not yours." It's as if they weren't even listening to what I had to say because I would repeat myself days or weeks later and it would be like starting over again on the topic. In fact, I told my oldest brother how now that my sis is going I wont be completing my masters in 2 years because I wont have time for the research aspect and he said "Why'd you choose that program??" Um hello! 1) I didn't know my sister would be going far away and that her schedule would be so full, I wouldn't have time for the research aspect 2) all science programs have a research aspect, though there is the option to just do a review on a paper or something but since I want to go into research as a career I have to do the actual research part. I didn't volunteer to put my schooling aside but I was expected to after my sister got accepted to dental school. I wasn't asked it was just understood. I have accepted it except for those moments of weakness. Honestly, it's not like my sis never put her schooling aside, she did it for a semester after my mom's heart attack. But that was voluntarily, she suggested it.

@swalker and @narrowminded you are so right about the family dynamics in my house...believe me I do try to push against them! But it's like walking on a tight rope. Whenever I have suggested a change, my character has been put into question and even my mom gets angry at me. Part of it has something to do with the fact that my voice naturally gets high pitched when I'm stressed but they still don't get after 23 years that's a normal voice for me. I'm not even yelling. I used to yell, but I don't and try not to anymore. I try to be calm. Honestly, my family literally expects me to do a complete personality change, while they all stay the same; some people will never change but I can apparently wow I'm super. Before this disease invaded our life, I was pretty antisocial and introverted I didn't care to have guests over haha. I dreamed of going far for my masters I dreamed of traveling the world. Before this disease I was so close with my dad and not that close with my mom. Now I'm forced to interact with these strangers that come to our house to take care of my mom and I stayed close to home for my masters, I haven't traveled out of the US at all and I don't have a close bond with my parents. I try to with my mom but my sister is the one she confides in.
I will definitely consider the professional counseling.

Thank you all for your advice and words of encouragement. When I posted my thread last night I was truly in a bad place. But now after reading and responding to your replies I feel so much better. I can start this journey again as a better person and a better daughter.

 

[Narrowminded]

My daughter just started going to counseling in June. This after she totally broke down from the stress she placed upon herself. As mentioned above, not wanting to leave me here alone. It has been huge for her. The counselor can help you work through your feelings and give you strategies to work with the situation.

Something that came to mind is maybe writing a letter to your dad about what you are feeling, that way there is no high pitched voice, just honest feelings. Maybe what you say would be heard better that way.

I'm guessing, based upon what you have said, getting your dad to a counselor may be a little difficult. However, if you started going and the counselor asked him to come on the pretense of talking about how to help you, I'm sure they could in effect also get him to talk about the dynamics because that would relate to your health. It might be a way of getting your information to him through a neutral 3rd party.

Just some things to think about..

You mentioned your mom having a trach, is she on a vent as well? Just wondering about her progression and what movement, speech or ability to she may have. That might he,p us help you as well

Hugs,

Sue

 

[studentndaughter]

@narrowminded I hope your daughter is doing well now! After reading about that I am definitely going to suggest counseling to my sister. Knowing her, she'll be so stressed and worried in the beginning of dental school, her grades might suffer. Writing a letter sounds like a good idea actually, thanks!

Yea she's on trach. When she had the heart attach they did put tubes in as an emergency, replacing her bipap, and then when she survived, to replace the tubes she had to get the trach,; that was over a year ago. She could talk and eat with it. She had her balloon all the way deflated and she was fine, the machine didn't make any alarms. She would only have to inflate the baloon at night. Only about a half a year ago did she experience difficulty with having a deflated balloon so she was inflated more and so couldn't talk as loud but she could still eat. Then a couple months ago, her ENT suggested doing some shaving down around her trach because it was hard for them to get the trach out, and then she epiglottis got much weaker and she started leaking mucus from the trach.

It's really sad that insurance company don't adjust with their clients. Like the progression of disease changes and with it so does the level of care needed but the insurance companies are only willing to pay for what the average patient goes through. For example, what is considered a normal amount of trach leakage required 50 trach pads a month. But eventually trach leakage will increase and 50 pads will only be enough for 2 weeks. Like before that trach surgery so they could easily take out the trach happened, she only needed a pad change in the morning and night, but after it it's like 4 times a day sometimes 5. But the insurance company doesn't want to budge and pay for more. Instead you have to sacrifice another maybe minor necessity to make up for this major necessity. Really annoying and disappointing.

Also she used to yawn like really wide (imagine a lion rawring - so cute when my mom does it lol) and now her yawn stretches half that normal length, I noticed this about a week and a half ago.
We communicate by either reading her lips or spelling out what she has to say and she'll say yes by blinking.

 

[Narrowminded]

Ok, I have a big suggestion for the mucous. My husband also used to talk around a deflated cuff on his trach. About a year and a half ago he lost that ability. He also has issues with the mucous around the trach. He takes a drug called Robinul (glycopyrrolate). That really cuts down on the mucous and therefore the gauze pads needed. I hear you loud and clear on the insurance and what they will and will not pay for. However, the drug is a huge help. They do get used to it and it has to be upped from time to time. Brian needs his changed again. Also I have found that very low dose benedryl, like 12.5 mg (half of a regular tab) or even half of that can help as well. Some people also get Botox injections.

As to her speech, look into a Tobi or Assent speech device. It is a computer that will speak words. It can be used in several ways, either with a switch that can be operated by muscle twitch or with an eye gaze system. Even Ipads can speak what you write if she could still type on it. As to the muscles for a switch they can use just about anything. Since she can still move her jaw, they could use that, or even her temple. It's amazing. Your ASLA should have a loaner closet and you may be able to get one from there to try. Look into that. It really opens up their world. Insurance should cover it. Also, you do have to pay a small (50) for us fee to be able to access the internet. Brian watches youtube, reads Kindle books, listens to Pandora, does facebook etc. You could do Netflix over it as well. He also can control his TV through it as well. And I've heard others say that you can you "Alexa" with it. You speak the command to Alexa and then anything she can do they can use, Assuming you have your house set up and networked. Like turning on a light etc. We don't have an Echo yet so I can't verify it. Maybe someone else will chime in on that.

Hugs,

Sue