Stubborn and Frustrated

[Katie C]

BlueK... a quick lesson in FTD... in general it is not that the person "hasn't accepted" what's going on. FTD effects something called "executive function" in the brain. For most of us, before we put our hand on the stove, our brain says Stop! That's hot and you'll get hurt! Or imagine have strep throat and you can't swallow... you're brain tells you soft foods for now! That part of the brain becomes atrophied with FTD, so the person doesn't receive those warnings. That's why a person with FTD must be watched constantly (especially if they are still mobile!) It's like living with a very tall toddler.

 

[jacquie]

Dear Designdiva,
I am so sorry you are going through this. It is just awful. Please feel free to vent and get it off your chest here.

Praying for you and your PALS.
Jacquie

 

[designdiva]

Thanks Jacquie, I have avoided posting much in the past and just read others posts but at some point you just have to get it out and also let others know that they are not alone in what they are going through, caring for a PALS often feels like it is you against the world and is very isolating when none of your friends or family members seem to have a clue and most don't really care to hear about it. I have found this forum to be a huge blessing and lots of helpful suggestions and stories from others.

Katie, thanks for all the suggestions, you are a fountain of knowledge that I bet you wish you never had to know! I can't imagine the teeth grinding! My step dad does a little sometimes but not often and not loud, I think I would be destined to live with ear plugs if I had to endure that!

 

[bemindful]

I promise we both look like demented ghosts wandering about the house (I told my sister the other day she looked like the creepy girl from The Ring she was such a mess with eyeliner streaked down her pale face and her hair falling all over her face, we try to find humor any way we can these days just to get through it lol).

I would like to know what happened with the nursing home. I am trying to figure out what our next move is here, it is clear we cannot continue on like we have been but I'm really not sure which direction to go and of course finances and Medicare/Medicaid rules play a role in limiting our decision making as well [/QUOTE]

designdiva,
I sent you a message about the nursing home disaster. I would have replied earlier but I didn't know we could send and receive messages! I love this forum.
But I had to say that your above quote cracked me up. I had to go into the DMV the other day and they took my picture. I was mortified! :-D It is godawful and I look like the walking dead: sunken face, pale and frowny. I swear this is putting decades on me by the minute.

 

[sh789]

I'm new here too and have been feeling the same as you. I was overwhelmed with relief that I'm not the only one feeling this way! I am taking care of my mother- in-law, along with my husband, aunt, and sister-in-law and have been going through similar situations with her. I had no idea what FTD was but boy does it sound like her. I just had a conversation with her about being stubborn and thought, "I need some help here or I'm going to go crazy!" so I went on this forum and read your comment! Things have been progressing faster and faster and I'm never sure if I'm doing the right thing or not. I feel guilty not being at her side all the time, but I also know that it's just not possible. She doesn't want to wear her oxygen, she's can barely walk with assistance but we found her in the kitchen last night because she wanted to get up and get a paper towel! I am definitely glad that I decided to join this forum!

 

[designdiva]

Welcome sh789, I'm glad the post helped you realize you're not alone in dealing with a terribly stressful and difficult situation. I struggled with the whole "am I doing it right" issue too a lot in the beginning but I've come to realize that the truth is there is no "right way" to deal with ALS (or the FTD for that matter) and the caregiving needs that go along with it, we all struggle and just do the best we can. My step father is progressing very quickly too and it is so hard to try to keep up with figuring out all the new ways you have to learn to do things and all the new equipment that is constantly needed and then trying to figure out how to get that equipment (and how to use it!). You'll find a wealth of knowledge and supportive people on this forum, if you are struggling with something don't be afraid to ask or say something, chances are someone else is having those issues too or has had them in the past and can offer some advice to help you get through it. If your MIL is staying with you and you are having issues with her getting up in the middle of the night I would strongly suggest getting a baby monitor so she can ask for help and doesn't fall trying to do something herself, they also make sensor strips that will trigger an alarm if she gets out of bed if she is too stubborn to call out for help. ALS is bad enough without broken bones or concussions to deal with on top of it. Back in April I woke up at 8am and found my stepfather laid out on the floor in a puddle of pee crying because he had gotten up at 5am to pee, he fell and didn't have the strength to get up or reach the phone to call for help, I felt so terribly awful and guilty for not knowing he'd been in there laying on the floor for 3 hours soaked in urine, cold and scared. He has been having a lot of pain in his shoulder which causes him to scream out which I didn't attribute to the fall at the time because he didn't complain about it until a couple weeks afterwards but now thinking he may have fractured something when he fell, we need to go get x-rays done soon to find out but the moral of the story is: don't be like me and wait until it is too late and something bad has already happened to start keeping tabs on her at night.

 

[sh789]

Thank you for your comments and suggestions We purchased a baby monitor with the video screen and feel a bit more secure. I think the hard part is knowing when something is an "I need you it's an emergency" call, or "I need you for some random reason" call. Sometimes she calls out like something terrible is happening and when I go running in she wants her blanket to cover her feet or something goofy like that! I guess we just do the best we can right?
Does your step-father wear a bi-pap or oxygen? We are having a horrible time trying to get her wear either even though she needs to be wearing them 24 hours a day.
Hospice has been a big help. We got hooked up with them after my MOL fell and hit her face. Her doctor had told us that she didn't qualify because there was a "six months or less" rule, but they accepted her right away and it's been really helpful.
Stay strong!

 

[designdiva]

We are working on getting a bi-pap machine (his medicare is messed up apparently they entered his diagnosis as MS which he was originally diagnosed with but haven't updated to ALS since I faxed in paperwork). We struggle with the stubbornness in other areas, mainly regarding food/drink/medication choking, but I have come to the resolve that it is his life and his choice... bluntly put, he is going to pass one way or another from this disease and I'm not going to spend the time I have with him fighting him tooth and nail about these things.

I completely know the issue with the frantic calls, we get that a lot, I used to go flying in to check on him and often it was a silly request like to turn off the porch light or adjust the fan and other times it really was serious and his calls were always the same... one day he had dropped his cigarette on his arm and he was yelling, my husband was just like "what?" because we had gotten so used to being yelled for over trivial things I am kind of to a place now where I do get up to check on him, quickly if he is where I can't see him, but I don't jump out of my skin when he calls anymore. Recently he has been so tired he pretty much sleeps all day and I know when he calls it is usually either to pee or to have someone adjust his position and he has stopped yelling over silly things so often... in a way it is a little bit of a relief from the constant anxiety in the house but on the flip side of that my sister gave him a cigarette today and walked away for a minute and I walked in to him completely passed out asleep still holding the lit cigarette, I really hope he gives that up soon, he can barely hold them or get them to his mouth anymore anyways but he keeps trying and it is just one more thing to worry about. You are right, we can only do the best we can. I am hoping to get hospice and/or some in home help very soon, I have heard it helps a lot and we are just so tired and frazzled that it would be such a welcome relief to have a little help.

 

[bemindful]

designdiva,
My mom stopped smoking when she could no longer put a cigarette to her lips very well and also could not suck on it. I was happy about that.
My mom is also back home from the nursing home disaster that lasted almost a month. Actually she went to one for two weeks but she then went to the hospital as a result of neglect (no one was watching her bowel movements and she became so compacted that she then couldn't urinate). We then we tried another. It was awful. She was depressed; the workers had no idea how to treat someone that has ALS; she was depressed. We didn't have even one pleasant conversation or exchange the whole 3 1/2 weeks she was away from the apartment. All I did was put out fires, discuss meds and conditions, listen to her complaints, feel guilty and overwhelmed.
We also now have Hospice on board. They are a help. They do not provide respite help at all, but they do take care of equipment, supplies, and meds. They are also there to help YOU deal with what is going on. They listen!
Mom is the one that wanted to go into the nursing home and it was Mom who decided to go home. She knows she will have times that she will be alone for several hours at a time. Not totally alone as there are always people checking in on her, but not someone by her side. Frankly she will be happier. In the nursing home she would press the call light and it would be anywhere from 15 minutes to an hour before people showed up. If she is going to have complications, or pass for that matter, as a result of on one being by her side for a short while she would rather that happen at home. SHE made the decision to go into a nursing home and SHE made the decision to go home. I give her that.
Hospice told me more than a dozen times that they were VERY CONCERNED that she will not have 24/7 care at home. I also would lose my mind if I were absolutely by her side every minute of every day. With her needs, her FTD, her emotional reactions, I would be absolutely worn out and would never be able to enjoy her as mother/daughter. It is crazy.
After the last Hospice worker told me how concerned they were, I told them I would rather hear solutions rather than problems. I asked them "what would they do if she was their mother?" This is what she wants! She is a grown woman with a progressive disease that will take her life. We all know that. It is an impossible situation and there are no perfect solutions. Quality of life is preferable to some illusion of safety net.
The hospice group we chose has assigned a caseworker who's brother had ALS. We meet her tomorrow. I am hoping she will have insight to the subtle and unusual needs of a PALS.

 

[designdiva]

Bemindful,

I am glad you have the stance on it that you do, realizing that she is going to pass from something regardless and just trying to keep her happy while you can. There is no one who can be at someone's beck and call 24/7 and if something happens that is fatal chances are you wouldn't be able to stop it anyhow.

My step father is in the hospital right now, I had to call 911 Friday evening to come and get him due to constipation/dehydration and not having the needed equipment here to move him around at the moment. On the bright side he agreed to get a feeding tube placed, I don't expect it will solve all his issues but at least he can take his meds without choking and can get enough liquid down that he won't be dealing the constipation/dehydration to the level that he has been. They tried to turn around and send him home from the ER without really doing anything and I refused to bring him home so they had to admit him. It is hard to leave him anywhere knowing he cannot communicate very well at all but even here it is hard for us to understand him and it is only for a few days, plus he can get IV fluids and better pain management there. I think from there we are going to try to get him into a nursing home at least for long enough to allow us to get equipment and hospice in place before attempting to bring him home, currently I don't really see any other choice because we are unable to lift or move him with what we have.

I am glad that your hospice caseworker has experience with ALS, I am sure that will prove helpful! I have also heard that they provide counseling to family members/caregivers and that in itself is worth gold when you are at the end of your rope just to have someone to talk to. Keep me posted with how things are going, I have been thinking about you and your mom and wondering how things were progressing with all that you have been going through.

 

[bemindful]

designdiva,

I also think about you all and your step-father. I actually told a couple of people about your funny shares illustrating when you are just beside yourself. Like your husband yelling "What?!" from the living room. It is not really funny, but when you are that situation, we have to laugh. I can relate! There is NO WAY someone can understand what psychological somersaults caretakers of PALS.
My mom got a feeding tube over a year ago. We were all kind of afraid of it. It was like realizing a certain doom that we had been told we would have to face....kind of 'giving in' or something. She was so relieved. There was so much less anxiety and risk surrounding nutrition.
Regarding his difficulty communicating, are you looking in to communication devices? My mom graduated from a Dynawrite to an I-Pad and wireless speaker when she could not longer type. I wish we would have had one from the get go. There are a couple of $1 and free downloads for write-to-speaking that have been wonderful. Plus she can surf the web and play computer games. She uses a stylus that we got online that telescopes like an antenna. As she loses her only good arm, she is having a harder and harder time with it and I pray we can figure out the next step. But it has been a real peace to her to be able to communicate and feel she has access to the outside world.