intro / need advice (from PALS esp.)

[Laura in CA]

This is my first time here and I hope you can help! Intro: I’m a part time caregiver for my dad who was diagnosed January 2008. He is 66 years old and completely paralyzed now but can still move his head from side to side. He can make sounds but I cannot understand him anymore, and our communication is entirely me guessing and him nodding or shaking his head to get just basic needs across. He has a feeding tube (about two months now) and does not eat or drink anything by mouth. He has just started using breathing assistance but I don’t know specifics of that yet as I was on vacation when that started last week. He is at home with no regular professional help; my stepmother is his full time caregiver. I don’t know how she does it! I go visit him twice a week; we give him a real shower once or twice a week. We’ve talked about hiring someone to help do showers more often and to just give my stepmother a break. The few people they’ve brought in have not wanted to do the showers the way we do; they basically think it’s not safe to try to stand him us and hold him up as we do, they’re afraid they’ll drop him, they’re worried about liability. And frankly he doesn’t want a stranger helping with showing, toileting, or even just “babysitting” him, which I completely understand. So that means that family and a few very close friends do all of these things. I go to dr.s appointments with them and help with general care when I’m at his house a.k.a. I am used to transferring him, taking him to the commode, feeding through the tube, etc.

I am a stay at home mom to two toddler boys who obviously require my full care! I’m married and my husband adores my dad but he doesn’t see him often – mostly because when I’m with dad, he is home with the kids. I don’t have a regular babysitter for my kids right now and have never hired a “nanny”. I have other family nearby and neighbors/friends I trust who we share babysitting with for occasional date nights or doctors appointments. But mostly, I am with my kids 24/7.

My dilemma is my stepmother needs to go out of town for a week, and she asked my sister and I to come stay with dad. I thought it through and decided I’m not willing or even able to leave my kids with hired help for four or five days. We just returned from our first vacation ever without our kids, and my mother and sister took care of them while we were gone. I don’t feel comfortable leaving my kids with my mom again so soon, both because she has a busy life and a fulltime job, and because it would be very hard for me and my kids to be apart again so soon. Dad and stepmom suggested hiring someone to watch the kids at their house while I am there, but their house is very small, not kid-friendly at all, there are no parks nearby and they have a small patio for a yard. And, just as my dad doesn’t want someone to care for him just because they are paid to do so, I don’t want my kids in someone’s care all day who I don’t know well. If I had a month to hire someone I trust then it would be different, but Stepmom needs to leave right away (her own father’s health is failing). I know, way too much background info here.

Bottom line I told them I can care for dad but it needs to be at my house. I can have friends and family come by to take the kids for an hour or two each day. I can have someone take my oldest to and from preschool. If we’re at my dad’s house that would be impossible to ask. Also, I would have help at night with my husband coming home around 6pm. My sister can work from my house and help me for two or three of the days as well (she also has two kids a bit older, a full-time job, and lives a 90 minute drive away). We can give him his own room and the biggest challenge is getting a hospital bed here for the week – everything else we can transfer by car, even though it will be a ton of stuff.

He did not like this idea at all, but cannot articulate specifically which part is his biggest concern. I know privacy as far as using the commode and sleeping is a concern but we have rooms for that. I think he is probably concerned he won’t get as much rest, which is valid, but if I am able to line up help like I think I can, then there should be plenty of time during the day with no kids here. We’ve got the same entertainment systems here as he has at home, which I am sure he’s thought about since all he can really do now is watch t.v. and movies. (BTW he just got a Tobii delivered yesterday, but it’s not attached and setup yet. If we can get that setup and working - even just for basic communication -before she leaves, it will help a lot. My hubby is a techie and has read all the user guides and knows he can get it programmed to run our t.v. and movie system, which will give dad even more control than he has at home.)

I feel awful, and telling him I just can’t do it the way he wants was very, very hard for me to do. We were on the phone, it was basically a one-way conversation as it always is. Tonight I am seeing them and my stepmother did make her airline reservations yesterday. I think he will choose to come to stay with me as the only other option is to hire someone they don’t know… and frankly I don’t trust that someone would be able to meet all of his needs as well as I can without having time to really get to know him and our routine. I am forcing him into a situation way outside of his comfort zone, because I am too uncomfortable to do it the way he wants. I don’t know what else to do. I really want to be there for him but it comes down to, I am not willing to leave my kids in hired help care, just as I’m not willing to leave him with hired help care. And, I am honestly afraid to be alone with him now at his house. At my home I have several neighbors home all day (working or retired or moms) who I could call to come over and help in a flash. At his home it would be just me and him, and I’m just scared.
Is there something I am missing? Is there a better way for me to explain it to him? I know in my head I’m not being selfish, I need to take care of my family too, but I feel like I am being selfish. And I feel that dad and stepmom and probably thinking “You just went on a vacation, why can’t you do this one thing for me?” Honestly if several PALS respond here that I just need to put my family aside right now and do it his way, that I just can’t understand how he’s feeling, then I think I would do it. I am just looking for direction, input, suggestions, anything from people who understand!
If you’ve read all of this, I thank you very much in advance just for reading it! If you respond then bless you! Laura

 

[Blubear]

Hi Laura, Welcome to our forum. So sorry you had to come looking for us though. I do not have ALS it is my dad, so sorry I am not a PALS to give you some of their thoughts, but I am a mom. My daughter is now 20, but I can remember when she was born I had a really really hard time leaving her as well. I worked part time and that made me feel guilty. When I had to go on short trips, I felt guilty. I wanted every waking moment I could spare to be with her and to be a mom. All her friends came to our home for the play dates and overnights never the other way around because I just didnt want to share her with anyone else. So I really really get that you do not want to leave again so soon. Personally, I think you are a wonderful daughter. Your dad is lucky to have you! I think you have found a really good compromise for the whole situation. It could be that dad doesnt want "change" is all. Any type of change is stressful on anybody. I know you feel you are being put on the spot and caught in the middle of being a parent and a child of someone with ALS. You are truly doing the right thing hun. It is only a week, dad will get over it, and perhaps he may like it so much, he may not want to leave, ya never know! Your stepmom will just have to understand. If she doesnt get it, she doesnt get it. That is her issue. Yes she is going through a rough time, but she can thank God you are there for her! Only one question comes to mind and that is why isnt your sister doing this? I am assuming that she just isnt set up for it right? Because if she was, it would be so much better if she could be the one to take him for a week and then you go over to her home to help just like you are doing at his home now. If the sister is not an option, don't sweat it. You are doing the right thing. I am sure some PALS will send their thoughts here too. Hang in there hun. .....Hugs, Blu

 

[Twinsmom]

I'm not a PALS either-my husband has MND- BUT my 2 cents...I agree with Kari...I wouldn't be at all surprised if your dad ends up really enjoying being in your home MORE, because there is activity to watch with your kids and passive stimulation that he doesn't have in his own home. You have come up with an incredibly gracious offer to support your father. You will find MANY PALS here, who have NO ONE...literally and are at the mercy of paid caregivers who do NOT have the emotional commitment to comfort and gentle care a family member has.

Good luck!
Melody

 

[brooksea]

So sorry about your dad and the situation you find yourself in. Please do not agonize any longer over your decision to bring him to your home. You are doing the best for everyone all around! Your offering of a solution to their dilemma should be enough. It is their dilemma with you trying to accommodate. You are a great daughter to even extend this offer. It sounds like you are very detailed and already have it all planned out. Your dad, I'm sure, is grateful he raised such a daughter! He may disagree with this solution because he feels he will be imposing on you and your family's life more than he feels he has already.

I'm sure your dad will be very grateful that he had the pleasure and the time to spend with his grand kids. The added plus of your husband getting his Tobii up and running should really please him as well as your step-mom.

Go for it! And GOOD LUCK! I hope you will let us know how it all turns out...

 

[joelc]

From one who is worse off than your dad I want to tell you that you are a wonderful daughter and please don't feel guilty. He has to realize you have a responsibility to your family first and he needs to be a lot more flexible. It is not a desirable thing to have outside caregivers but there is really no choice. It is something he will have to get used to. I have agreed because it is in the best interest of my loved ones to do it.
There is nothing wrong with him comming to your house where you will have help and can maintain some semblance of normality for your family.
He needs to understand this!

 

[indigosd]

Laura, you are such a loving and wonderful daughter! I too agree with all of the above. I will go one step further. HE DOESN'T GET A VOTE! His wife has a situation that she needs to attend to with her father. You have small children and a husband. If he wants to have care he will need to spend the week at your house PERIOD! ALS does not give anyone the right to be selfish and self centered. It is only a week. He should thank God that he even has the option. Giving you big hugs and one piece of advice, Guilt is SELF imposed and you have nothing to feel guilty about in the caregiving of your Dad.

 

[sadiemae]

I agree with everyone too. You should be able to rent a hospital bed for a week also. HUGS Lori

 

[John1]

Laura, it sounds like communication between your father and his caregivers is a major problem. Perhaps many of his fears would be allayed if you could solve this. Perhaps Joel or others with similar difficulties have some suggestions.