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designdiva

Active member
Joined
May 30, 2013
Messages
43
Reason
CALS
Diagnosis
06/2013
Country
US
State
Indiana
City
Indianapolis
Pretty new here, I read on occasion but never post. My sister, husband and myself have been caring for my stepfather for about 7 months now, he is rapidly declining and very stubborn about everything and seeing major repercussions from it this weekend. The nurses and therapists have been telling him for months to drink more water and less soda to thin out his mucus and help with bowel movements, he has been telling us he cannot swallow it and would simply go all day without drinking it if that was all we gave him. They have also been telling him to take laxatives and stool softners, which he also refuses most days. Friday he was so constipated he sat on the toilet for 9 hours, took 4 tablespoons of milk of magnesium and 4 stool softners, *magically* he was suddenly able to drink down 3 glasses of water, still could not go so I had to give him 2 enimas which resulted in him going to the bathroom (both urine and feces) all over everthing for 36 hours straight. We ended up doing 3 loads of laundry to clean all the soiled clothes and linens and I am pretty sure I took out at least 2 large trash bags full of disposable goods. Needless to say no one got much sleep for that 36 hours. The therapists have been trying to talk him into getting a hospital bed to help with getting him up and down and sitting up, he has refused repeatedly, tonight he has been having issues with overproduction of saliva leading to gagging and also getting mucus stuck in his throat that he is unable to clear and I have not slept in 24 hours at this point and got little sleep the night before and he just keeps yelling "help me, help me" because he wants to be sat up in bed to spit and try to clear his throat, which he could do himself if he had a hospital bed. I am so tired and frustrated that I'm about to put my head through a wall and he just keeps on. He has barely ate at all in 2 days and has only taken half of his medication that he should have taken, once again he has difficulties swallowing but will not let us crush it up and prefers to choke and spit chocolate milk all over himself and the carpet and then cry about it everyday I suppose. We are all at the end of our wits with him, even though he has 3 of his own children I only get help from one for a few hours a week if I'm lucky and then he will not allow anyone but my sister or myself to help him with anything, my husband sat with him a couple hours this week so I could take a nap and checked on him multiple times and he never asked for anything but the minute I woke up he had me running around like a crazy person getting him stuff and while his daughter was here for 5 hours last week she offered him food repeatedly to which he declined and the minute she walked out the door he tells me "I'm hungry", I called her over on Friday while I was having a melt down to help him so I could step outside and regroup and he kept asking for me over and over, when she told him that she was not going to go get me and asked what did he want, he simply wanted to lay down in bed (which he was already sitting in, grrrrr). I have been trying depsperately to apply for Medicaid and have been denied twice for resources I was unaware of, though they aren't much they put him over resource limit and every time we reach the end of a month and I think I will be able to reapply he gets some amount of money (tax check, 401K cash out, disability back pay, etc.) that isn't enough to cover all his bills but the time it takes people to cash the checks I send puts us stuck waiting out another month to be able to reapply. He was finally approved for disability a week and a half ago, which after getting the runaround from the social security office, I am told should come with automatic medicare enrollment but so far I have received no documentation that his disability was approved and no medicare cards in the mail, ss office just keeps telling me I'll get something in the mail... we are trying to get him into a nursing home or at the very least get some regular in home care to relieve us a bit but my hands are tied. Does anyone else have a PALS who seems to just be trying on purpose to be as difficult as humanly possible? I wake up in a fairly good mood everyday and ready to try again but by the end of everyday I just want to scream and tear my hair out, I'm not sure how to deal with him anymore, he has been called on some of his BS but it doesn't seem to make any difference and I feel neglectful ignoring his cries for help even if it ends up being something stupid like to retrieve a dropped remote that he doesn't even need but simply wants it put back on the table meanwhile screaming like he's dying to get my attention from the other end of the house and interrupting what little chance I have of getting any housekeeping done around here.
 
I am so sorry for all you are dealing with. Not having walked your path I am not sure what to say. It does seem as if you have to set rules and boundaries but how you do it I am not sure. The truth is that he needs you and if his choices take you out physically and or emotionally he will suffer for it. Is this his pre ALS behavior? If not do you think he has some FTD also? Doesn't change what is happening but may change how you deal with i
Thinking of you
Nikki
 
if this was not the way he acted pre als, then he may have some FTD going on too. I am so sorry, as if ALS alone is not hard enough. there are some things you can do, you just don't have to tell him as they are for his own good. first, some foods increase constipation--we stay away from milk products as they cause more mucous and constipation. you could switch to soy milk if he insists. also, I add water to all drinks--. also, mix in some Miralax daily with a drink--it is tasteless he will not know. sounds like he really depends on you, but that is so hard when it is little things and others could help him.
 
Barbie beat me to it but yes, he needs to be evaluated ASAP for FTD. He won't ask the doc, I can pretty much guarantee that... best have you or whoever is the contact person with the neuro send an e-mail before the next visit. Start keeping a journal of the behaviors... things like "not letting you crush pills". FTD effects "executive function".. put simply, the person can no longer see cause/effect. So for us it's simple.. I can't swallow my meds this way so I'll do it another way. For the person with FTD "I am GOING to swallow my pills the way I want to DAMMIT!" They also lose empathy, hence the meanness... no, it's not your imagination! In the meantime, as far as keeping him hydrated.. we found popsicles and jello to be really helpful, as well as putting thickit into his regular water.

This is going to sound harsh, but if it IS FTD you're going to have to learn to lie and be comfortable with it. Crush his pills and mix them well into something he really likes... and don't tell him. Pills Glen wouldn't take for anxiety suddenly became "medicine to help you swallow." It's a vicious disease, it's brutal on caregivers... but you do what you have to do. Please go read through the postings on the FTD page on this forum, you'll find a wealth of information.
 
thank you all, I had no idea about FTD so had not considered that possibility. He has an appointment at the ALS clinic on Tuesday so I'll see what I can find out from them. It is such a hard disease to decipher, sometimes I think he is just being difficult because he has lost so much control over his life that all he can control are the people around him and other times I think he hates the world and is being spiteful and stuck in self pity which he has every right to feel that way but other times the stuff he does just makes no sense and that is what I struggle with. In some ways he has always trusted me to do things for him, I took care of my mom a lot while she was alive and him when he had his heart attack several years ago, being a bit of a perfectionist myself I sympathize with wanting things "done right" when you are unable to do them yourself but at some point you have to relent to allowing others to do things for you and anyone is certainly competent to cook or order him food, pick up the remote, get him a drink, etc. so it doesn't make sense that he won't take help in that way from others. And the yelling and crying fits I could go on for days about, I never really know if those are a product of frustration and pain or in part due to pseudobulbar palsy and as I said I had no clue that FTD was even something to be possibly considered. He has told me it is time for a nursing home and thanked me for taking care of him as long as we have been so I feel relieved that we can hopefully do that soon and I can spend my efforts visiting him and trying to cheer him up rather than spending my days being frustrated and angry with him. I know many choose to keep their PALS at home and I feel guilty in a way allowing him to go to a home but at the same time I know realistically we are unable to continue this way (he is 250 lbs. and my sister and I are both under 90 lbs. and are often stuck home alone with him so the lifting and transferring are getting impossible) plus they are better set up so he can get a real shower and get around better in his chair without slamming into doorways, etc. so part of me is excited for the things he will be able to do there, plus he will be closer to the rest of his family (who I am hoping will come visit him more then) and knowing that he'll be getting care from people who aren't walking around half asleep in zombie-mode like we are all the time and also they won't be so hurt emotionally by his outbursts like we are.
 
designdiva, you have no idea how familiar your post sounds. OMG. My mom was diagnosed with ALS Bulbarpalsey five years ago. Her progression has become very rapid over the last year and I have been the primary caretaker although she lived independently, with daytime Medicaid caretakers for 5.5 hours a day. Outside of that, I pretty much do everything. HOWEVER.... I did not move in with her. She just moved to a nursing home two weeks ago. It really really sucks and isn't going to work out, but I will go in to that later if you are interested.
Regarding the FLD: I started noticing that my mom was becoming more and more demanding and VERY impatient. At first I attributed it to simply the frustration and awfulness of being disabled for so long and not being able to communicate/move/eat/ etc (she is much more advanced than your step-dad at this point). But I also noticed that she was much more so this way with ME, the person who helps her the most. At first I felt sad: I no longer had my mother. She never asked about my life, asked if I was exhausted, happy, sad, need a break, did I eat, how is my work search (impossible). But again, I worked on remembering that it isn't "about me" anymore. Then, people started pointing out how demanding she is of me. I would readjust her, and it wasn't good enough. I would ask her if there was something I could do and she would start kicking her feet and making noise. She would be constantly demanding something with not a bit of regard that I had not eaten, that I have not slept. It goes on and on. I could become exhausted fulfilling her every request, which is never good enough. Now with her in-home caretakers? Well, they are just terrific according to her. And they just love her to death.
I think the closeness of our relationship has something to do with it. However, when I began learning about FLD, everything started to fall in place. It is very hard.
So when she mentioned a nursing home some time back, I did the footwork. I have really had a hard time dealing with it. REALLY hard. I always thought I would stay with her until the end. But it is so hard. I become zombie-like out of physical and emotional exhaustion. Others on the forum have said I should live with her because it will be the last part of my life with her. But I would find myself becoming resentful and angry at her! I just don't want to feel those things when I have the last part of my life with her!
 
I called the doctor today to make her aware of my concerns before his appointment and let her know that I didn't wish to discuss it in front of him and she immediately said "oh yes, I saw that right away" she said she didn't do formal testing because of lack of insurance but wants to do some and definitely thinks that is what is going on. I kind of feel like an idiot for not seeing it sooner but I had no idea that even existed and with ALS things all just kind of go haywire and decline all the time and it is difficult to see the forest from the trees so to speak. I guess in a way I am relieved to know I am not crazy and that he isn't able to control his behavior so I can understand his demeanor is not purposeful but also now worried how much more difficult this is all going to get.

Bemindful, I sent you a message, I can definitely relate to the demanding and impatience, I feel like all I ever hear is frantic "help me, help me!" (regardless if it is something I can even help with or not) and most days I go with little sleep and one meal at 9 or 10 o'clock at night if I am lucky enough to even eat that in peace, it definitely takes its toll and is driving me and my sister to insanity, 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 :(
 
Side note, you may all get a giggle out of this... when I called and spoke to the receptionist to leave the message I told her I was concerned about possible FTD and did not want to discuss in front of my father... she paused and awkwardly asked me if I wanted to talk to the doctor about STD's, I said "No! FTD Frank-Thomas-David!" she sounded very relieved and changed the message lmao.
 
I am glad you already talked to the doctor and at least have confirmation of what you are facing.
Given everything you have told us a nursing home may indeed be best for all. Not everyone can do the home care and please do not feel guilty you would be caring for him still in a different way. ALS/FTD is a very cruel disease and it can take out the whole family if toy let it.
Hope you appointment goes well today
Take care
Nikki
 
I am sorry for your problem and wish I knew what to say that would help. I read about the nurse misunderstanding about FTD and thought you said STD'S. I laughed so hard that I fell out of my chair. Take care, Kim
 
You sound like Superwoman! Although even she needs a break before she loses it. I don't know anything about FTD like other's have mentioned so i will look it up. It sounds like part of it is that your stepfather isn't ready accept whats happening and let go of some things (like the soda and beverages). My mom was like that a few yrs ago with showering in our non-handicapped shower. I almost killed her and myself once. Also refused to use a walker and ended up splitting open her chin-then refused to get stitches which she obviously needed (she went eventually). With ALS we and our PALs are constantly mourning the loss of some ability. Your stepfather def. sounds stubborn. That has got to be so hard on you. As for him telling others he is fine then asking you for help-I went through the same thing. Made me want to pull a Britney, shave my head and smack some cars with an umbrealla lol. I'd have to sleep over during hospital trips because she didn't want the nurses helping. You are really amazing and even though i am sure its not always acknowledged he really loves and appreciates you. You are really a special type of person. Once you get the possible FTD situation figured out i would try to talk to him. I know its about PALS first but i think its okay to have an open convo and let him know (to some extent because our PALS have enough on their plates) how it feels to have to watch/help after he puts himself in a compromising position. That you disklike his disease but love him. IDk but I hope this gets eaiser. Your post brought me back to our family a year ago, you are doing way more than alot of people ever could. I seriously want to give you a hug! keep moving forward
 
The doctor did tell us he has FTD and said that around 30% of PALS have it, it is a strange thing, he is still smart as ever and fully knows what is going on around him but some things are so off. At our last trip to the doctor he went in his power chair and did not want to take his walker, he doesn't use it to walk but does use it to hold onto when he stands and transfers, after a short time there he wanted to stand up and decided to use the bed in the room to steady himself, then he proceeded to turn around and lean his butt on the bed but couldn't turn back around to get back in his chair and began yelling for help (there was no possible way for me to help him), I asked why he had turned around in the first place knowing he would not have anything to hold onto and he just yelled "I don't know!". He has started having a lot of incontinence issues and the other day blamed it on eating applesauce, saying every time he ate the applesauce he peed on himself, then he freaked out panicking because he couldn't breathe and blamed it on the bacon I was cooking (the house was not smokey at all it just smelled like bacon). Yesterday I woke him up to get ready to go to the ALS clinic and he flat out ignored me and pulled the blanket over his face, I finally relented to having to halfway dress him in bed while he pretended to sleep and then just pulled the covers off and told him he had to get up because I didn't take the day off of work for him to not go to a very important appointment where he can get some help... he only got up because he went to the bathroom on himself and didn't want to lay in it. On our way to there we took a wheelchair taxi and the driver hit a bump which sent him into yelling "f- you, f- you..." repeatedly at the driver. He behaves this way sometimes and other times he will cry and kiss my hand and tell me thank you for caring for him and then the next day I can't manage to do anything fast enough to please him and he is angry, it is very odd, I blamed it on ALS and being stuck hating the world and feeling sorry for himself for a long time, who could blame him I'm sure I would feel the exact same way, but it is clear something else is going on.

The Britney comment totally cracked me up, I know that feeling very well! I wish I were Superwoman, truth is when the social worker talked to us yesterday I just flat told her right in front of him that we have got to get some help and that I fear my own temper and mood swings, I don't even feel like I know or trust myself anymore. I am so tired and frustrated and at the verge of breaking and there is no getting away from it, at least with a baby you can put them in a crib and walk away for a few minutes to get yourself together but when you are dealing with a fully aware adult covered in poo and screaming and crying in pain and really needing your help, how do you walk away? The doctor thinks he may have fractured his shoulder during a fall back in April, he never told me he fell on his shoulder until yesterday, he had been telling me he injured it playing football in high school so I figured he had some arthritis and due to lack of movement that it was locking up and that was why he will suddenly bust out screaming like a crazy person anytime his arm gets moved, I have never met anyone else with ALS in person and though I read others describe some pain it is hard to really know how much pain someone else is feeling to have something to gauge what is normal off of so I am not sure really what's going on. We're trying to get him in for x-rays to see what is up but it certainly does not help anyone's sanity to be dealing with the ALS, FTD issues and then this horrendous screaming, I can't do it justice describing it with words but the closest I can get is like someone who has had a limb spontaneously cut off and then looked at it for the first time, it is an absolutely horrific noise and it goes on periodically all day and all night long everyday while I frantically try to find something, anything, to ease his pain. I feel so terribly for him and do everything I possibly can to keep him comfortable but nothing takes the pain away until it decides to go away and there is no calming him down until the pain is gone. Thank goodness the doctor upped his valium dose and put him on some stronger pain meds and zoloft for depression and pseudobulbar symptoms, today is the first decent day we have had in weeks, he is clearly a little drowsy and loopy but is in a much better mood, I was able to give him a badly needed pedicure and manicure and he has happily been playing poker on the ipad most of the day and actually smiling and holding conversations with me (outside of yelling "help me") and hasn't cried or screamed at all today, it is amazing! The way things have been around here for the last several weeks have been totally unbearable and like living in the 7th layer of Hell, I am so relieved for the break, even though I am still here and caring for him he is acting like a human being again and that in itself is a huge relief!
 
oh honey--I am sending you a huge hug! you so need some help! I know that Katie is full of good ideas and tricks to deal with the FTD--it really is an unfair burden that no PALS or CALS should have to deal with.

I know that he only wants you, but you really must absolutely take care of yourself. You can not do everything every minute--your health and mental stability is also at stake. If your dad was himself, he would not want you to also descend into the 7th layer of Hell (LOL).
 
Thanks Barbie! I have been trying really hard to get some help both equipment and to get some real home healthcare so we can get out of the house a bit or even just to lay in bed and watch a movie (he has a nurses aid that just comes twice and gives him a quick bath but that's about it). It has been a crazy ride, undiagnosed for awhile, diagnosed with MS, told he was declining way too fast to be MS and left once again undiagnosed, getting worse literally everyday and finally just recently given the ALS diagnosis (which we had suspected for a long time anyways but nice to have it in writing to get things moving along) getting the run around with Medicaid, Medicare, etc. Visiting the ALS clinic here in Indy has really renewed my spirit and I am feeling hopeful things will start to fall into place soon now that he has a team of people there rallying to get him what he needs and it isn't just me muddling through trying to figure everything out on my own. Outside of a cure I think that is the one thing I wish most for other PALS, CALS and the people working on research is to find a way to reach a diagnosis quicker so people are left out there lost and alone for so long.
 
Sweetie, I am SO sorry but at least now you can start understanding and maybe get the right help. Glen didn't scream... he'd grind his teeth. Constantly. So loudly you could hear it two rooms away. I'm not sure which is worse! A suggestion that really helped save me... look around and see if you can find an adult daycare that is equipped for dementia patients. Glen went three days a week. I think he really enjoyed the outings. The time off for me was invaluable. The one here charged on a sliding scale. Sometimes you can find them through the Alzheimer's Association. The first day he went, I thought I was going to get all these errands done... I went home and fell asleep for three hours!
 
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