PSP- Please, help us to better understand or to cope

[tifferlynn]

Hi all, my mom was diagnosed with onset ALS on Jan. 4, 2010, I believe the website refers to it as Progressive Bulbar Palsy ALS. She lives MO. with my sister who is her main caregiver (who is a stay at home mom with a husband and 5 kids, 3 of which are 4, 6 and 11 years old) and then me who lives in IL. I am there from Thrush to Sun. to help. She also doesn't like anyone but my sister and I and mostly my sister. She'll ask for my sisters when I’m there and I have to say no tell me what you want or need, that sister is on break.

She has had the ventilator and the g-tube since March. She is unable to talk or eat and is losing her mobility fast; we already have to use a lift to move her. My mom also gets frustrated with us when we can't read her lips but won’t use her computer.

It’s so hard sometimes. It's hard to get her motive most days to get in her wheelchair or even stay wake. She asked us to move her sewing machine upstairs so she can sew (something she loves to do), and we also have a close family friend who also loves to sew coming over 4 times to help her. She did this one day on her own, every time since we have to force her to get up and try. We want to help her enjoy life while she still hears but at the same time I feel like a**hole. We also are getting a bit angry with her not trying to do more and just wants to lay in bed all day and sleep. Last night she beeped for me 10 times from 1 am to 3 am, only 3 times were for things like suction, moving her to her side. Please understand those types of things I understand and am happy to do. Its things like getting her a piece of candy or moving her sheet (which she can still do with some work). We do have a night nurse 3 nights a week but even then mom will beep the nurse to ask her to get my sister (who only gets to sleep in her bed with her husband the night the nurse or I am there). Mom also always wants my sister or I to be in the room even when there are others there to give us a break.

I do have a couple of questions:
1. My mom has her days and night switched and we've been trying to get her switched back, but even when she gets a good night’s sleep (only woke up once or twice) she will still sleep most of the day (if we let her). Is this common with ALS at this point?

2. How to talk to her about our frustrations or are we truly just being selfish and jerks.

Please help us to better understand or to cope.

 

[Miss]

I don't know what the answer is, but you are NOT a selfish jerk, nor is your sister. My husband can be a complete a** when it comes to his wants (not his needs - that I have no problem with). He wants, what he wants, when he wants it, the way he wants it, whether or not it is good for him or the family. It's enough to make you crazy!

Unfortunately, my husband sleeps in 2.5 hour intervals. Since he takes several naps each day, this works for him. It does not work well for me. I am quickly becoming exhausted. When we can finally get a night nurse, I do not plan to be available on those nights. I think if I can get at least 3 real nights of sleep, I will be okay.

You are in my thoughts and prayers. There are so many of us who know how difficult this is for you and your sister.

 

[Twinsmom]

Dear Tifferlynn,
I'm so sorry you are living with sooo much! I can't really speak to the losses your mother is having to face BUT I can offer hopefully, a few things to think about-

* Remember that your mom's energy is fleeting-even if she CAN do something still, by the middle of the nite she may not feel like she has the energy... Some of the PALS may be able to give you some insight regarding her sleep habits...
* Write down the things that are creating frustration for you (the endless beeps in the middle of the nite for example) and see if you can put in words how that action makes you feel (taken advantage of, not seen because you can't get the rest you need-whatever it is)
* Then during a calm moment, share some of these with her, and let her know what you'd like and how SHE can help you!
* Your frustration and anger is also part of your grieving process. It is beyond what we expect to EVER have to live through, loving someone living with ALS. I would encourage you to speak to a pastor/counselor type person to help you grieve the loss of the strong, whole mom you've always had and to make peace with the reality of what is happening (no easy way to do this!)

Pray for courage and grace...lean on the new friends you will make here to provide you with strength and encouragement.

Peace,
Melody

 

[brooksea]

What I gather is that you need to set up stricter guidelines and get the home nurse to abide by the guidelines in order for you and your sisters to get some rest. Have you sat down with her and told her none of y'all will be any good to her if you are not allowed to rest?

I know my husband will have energy one moment and practically fall out the next.

Very sorry for your family's difficulties, but, as indicated by others - it's time to have a nice little talk.

 

[hopeful warrior]

I hope you not be so hard on yourself. This situation is horrible for all concerned. It is exhausting! Communication can be very difficult because emotions are so raw. God bless you all.

 

[Zaphoon]

I feel very sorry for your mother. It seems the progression of the disease in her has been very rapid (diagnosed with ALS in January and already vented and PEG'd in March).

I know there must have been and continue to be those times you've put yourself in your mother's shoes and I'm sure this has helped with your coping skills.

It is your loving care that is making a world of difference for her now and when she is gone, you'll have the memory of having made that difference. Please also know that this kind of sickness can also mess with a person's temperament and overall behavior via frontal lobe dementia.

I hope you are able to get all of the help you need.

Kim

 

[rose]

What a hard situation your entire family is in! I agree with the earlier mention of FTD (Frontal temporal lobe dementia) this sometimes does accompany bulbar onset of ALS. There are a few members on this forum who are caregivers of those with FTD, and the challenge for is incredibly difficult.

You did not mention if your mom is on antidepressants. If not, this is something for you to ask her doctor about. It would help her to sleep, especially if given at the time during the day where she would be most drowsy from it in the evening hours, so it might help her get back on track with her sleep pattern, and it also would help with the anxiety she surely feels.

In reference to her problems and requests while others need to sleep: One thing I have noticed from my viewpoint, is even though I have good use of my hands during the day, it is not easy to grasp onto the sheets and arrange them for myself at night, although I manage. During the daytime, I'll think to myself that I must imagine it somehow, because I have the dexterity and strength to do much more than arrange the covers! It seems like I lose strength after I fall asleep, and also my hands cramp up, the fingers fold down, and, the coordination needed is not there. I think this problem is common, and know its on the list of things they always ask about each clinic visit. Therefore, it may be a completely valid request by your mom to have help with readjusting bedding, but, when there is a nurse on duty, the nurse needs to take more control of the moment.



Good luck to you and your family!