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bemindful

Active member
Joined
Jun 25, 2013
Messages
61
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
Missouri
City
St. Louis
I am wondering how other CALS have dealt with the FTD with their PALS. My PAL is showing the signs and it is driving us all crazy: "Shift this here, move this here, adjust this slightly to the right.....no, slightly to the left.....get this for me....no, not this one....that one. Don't walk away, don't stand too close. I know what I need, not you and....NO, you cannot sit down or rest because I have ALS and you don't."
She is never appreciative, never satisfied, never completely satiated.

I am becoming burned out. Depressed. I need to do something to care for myself, but I also need to care for my PAL. My PAL is losing support because my few supporters are all exhausted (Me the most. She NEVER wants me to rest and doesn't seem to care). No one feels appreciated and gets so frustrated that I am afraid that I will be last one standing.
FTD is horrid. I read the 'caretaker burnout' published by ALS/MS and I fit it to a tee. I thought maybe I should say NO more. But there comes the guilt and the resentment from my PAL.
I cannot keep this up.
Any suggestions? Is there something that the doctors have recommended? I've read the "have endless patience" responses and the reminders that "she does not realize what she is doing". I'm doing that and I'm exhausted.
 
It sucks, plain and simple. Going through the same here currently and cannot stand it myself though still trying to make it work. I keep telling myself I am only human, with 2 arms and 2 legs. I quit letting the panicking get to me, I used to jump up with lightning speed and now I get up calmly and do what I can the best I can, if the fidgeting is getting ridiculous I let him know that it is the best I can do and it is going to have to work. I don't sit there waiting on commands like I used to feel obligated to, I get up, do what I need to do and check in on him occasionally to see if he needs anything. It doesn't solve the overall problem but I have found keeping my composure and not letting his demands get inside my head helps. Don't let the guilt eat at you, you could run a marathon everyday and still it wouldn't be good enough for your PALS. It sounds cold but by shutting the ridiculousness down and making myself a little less available it seems to have curbed the neediness a bit here. Also, ask the doctors about anxiety medication if she isn't already on some, my PALS is on Valium and Zoloft, it doesn't stop the FTD but does seem to ease the panicked OCD-like behaviors a bit from what I am seeing. Remember that the cold behavior is a byproduct of the FTD and don't take it to heart, it will hurt you if you let it sink in. Remind others of the same thing, let them know that as frustrated as they are by it that you have to deal with it more often and it is just as hard for you and that you cannot handle it without their help so they don't bail on you. I think others tend to think that the main caregiver is somehow just magically immune to the things that stress them out and that is simply not the case, we get bothered by it just as bad and have to deal with it more often to boot. Stay strong and try to find a little time to care for yourself, as impossible as it may seem, you are no good to anyone else if you are in total burnout mode so you have to find a way to recharge your batteries.
 
:( I went through the same thing and still am with my mom...It's like they make up random requests just to make sure you are still up and moving. Idk if she has FTD but after reading posts with it mentioned it sounds SO MUCH like her. I need to look into it because i seriously think she has it. You are doing an amazing job. I wish I had some advice but I don't know what to say...I got a 24hr gym membership and started going for a few hours at night usually around 10pm. After the first week (which sucked because im so out of shape) it became a HUGE stress reliever. I get so sick of my whole life and even all of my conversations being dominated by ALS and my mom that it was nice to just listen to some music and sweat it out. I never liked the gym but now it is a lifesaver. Maybe you can find something convenient for you that fits into your schedule. On a side note--its incredibly annoying to hear people say the "you need time for yourself" speech, because its really not an option to take 4 hours let alone a day "off". Plus the overwhelming guilt you feel doesn't help lol. --So whatever little things you can find pleasure in, try to add them into your schedule (if time allows maybe you can go to barnes and noble, get a coffee sit and read for an hour just to get out) Or take your dog for a walk. I don't get to see friends much so a friend and I now go grocery shopping together...kills 2 birds with one stone we get to chat and I'm still getting errands done. I hope you find a little harmony in your schedule. Are you able to get sleep and eat ok? that makes a big difference, at one point i was only getting about 3-5 hrs a night and not eating well and i felt so miserable. All you can do is your best and it sounds like you are doing all you can. I will send some prayers your way
 
DesignDiva and BlueK58

Thank you! Wow, it is amazing how simply hearing someone say that they understand. It must sound crazy, or insensitive, to someone else when I tell them that sometimes I think my mom just wants me to be doing SOMETHING, regardless if it is absolutely necessary. I understand that SHE is the one that has to sit there, often for hours. And without the ability to scratch her nose, wipe her eyes, shift her bottom. So I think she wants everything to be absolutely perfect, just in case I am away when she is truly feeling uncomfortable. I do understand that. But it is not just the requests, but he manner in which she conveys it. She "cries". I know she is not actually crying (as in, no tears are present) because if I ask her to stop, look at me, she stops immediately and communicates. She will "cry" if her arm is not propped exactly so, or if her pressure sores are hurting. The response is the same. So it is always a heightened urgency.

And BlueK58, you are right. I am SO aware that my whole life is consumed with ALS. And to boot, my personal responsibilities are being neglected. B/C of not being able to work, I can't even afford a gym or to eat dinner out or whatever. I am aware that all I seem to talk about with others is ALS, symptoms, my mom. My dearest friends are amazing and supportive. But I have to remember to ask them how they are doing.

I will have to go back to work soon. Even if it is part time, but I need to work.

DesignDiva: What you said about OCD behaviors. My mother has them too. Her thing now is an extreme fear and paranoia of the house catching on fire when someone is not near. She wants to sleep in her electric wheel chair. She said that other PALS do it. I understand having a fear like this to some extent, but she is having nightmares about it and it has become a really big thing. Does your PALS know about the Valium and Zoloft? Mine doesn't want to take anything like that. The thought of it simply makes her more paranoid.
 
Even without Full blown FTD, they can still have personality changes--which seems perfectly logical having a neurological disease. Diva and Blue both have good advice on ways to handle the stress. Bemindful, something has to change for you before you walk away. please, think about some anti-depressants for yourself and ways you can get out for a day or evening every week. is your mom on Hospice? They sometimes have volunteers who will sit with the patient while the caregiver gets a break. sometimes you have to tune out the complaints but it is worth it!
 
Barbie,

You are right, something does have to change. However, no anti-depressants for me! I was on Celexa for a year and weaned off last fall. Do you know that the neurological withdrawal from that was so scary (especially having neurological disease in the family), that I determined I would not do that ever again. Sheesh, while dealing with my PALS I was taking a medication that interferes with my neurons and long-term affects are not known yet. That was just too crazy. No, I think more assistance and a spiritual adviser may be more on the table. :)

We just got Mom on Hospice last week. Thank God.
 
OK, a couple of suggestions... First about meds... while anti depressant and anti anxiety meds help, we found that the most helpful was a combination of an anti depressant and a low dose anti psychotic (that dose ended up being increased several times). While it didn't STOP the ocd behaviors, it certainly lessened them and definitely helped ease the audio and visual hallucinations. (some of you may remember that we apparently had a giant blue cat person from Avatar living upstairs). Secondly, if your PALS is at all mobile, check with your local mental health office and your local alzheimer's association to see if there is a dementia-specific adult day care in your area. Having a few hours totally your own a few days a week can go a very long way to saving your OWN sanity!
 
Yeah, I know the "take time for yourself" speech lol, people mean well in saying it but rarely does anyone offer to come help and even if they do they don't know what to do so it's not like you can really leave anyways. I am really struggling with that lately, he has 3 biological kids that all live here in the same city and none of them came by on his birthday, only one bothered to call, no one brought a cake, sent a present or even sent a card and here at the end of a 4 day weekend no one has bothered to come by either but will gladly express their happiness and how busy they are spending time at cookouts with friends or going out to do things with their kids, watching fireworks, etc. I try not to let it bother me but given that I have been taking care of their dad 24/7 for the last 7 months they all seem to be enjoying their lives while not feeling in the least that they should be here at least a few hours every week to pick up some of the slack but I guess that's a whole other story. I do try to alternate with my sister so we each get a few hours off a week to get out even if it is just to see a movie or something and I hardly ever take lunch at work but I have been trying once a week to do so and meet a friend during that time. In between times I try to grab a few minutes here and there to pull weeds in my flower beds or play fetch with one of the dogs, at least I can take the baby monitor outside with me to do that and it clears my head a little. I hear a lot of people say the gym helps, I'm not a gym person but I will go outside and do manual labor around the yard to get the anger out. I am able to sleep okay now, a couple weeks ago he was waking up every hour or two to pee or yelling that his arm hurt so I was getting no sleep and was absolutely miserable but now he is only waking up once or twice during the night which is more manageable. Eating... well, sometimes I do and sometimes I don't, I try to make time but often we eat our meals together and usually my food is cold by the time I get him situated or he gets mad at his food and angrily shoves it away from himself which in turn makes me too angry to eat or I feel guilty about eating after he has made such a scene about not being able to eat something. Of course will not eat anything pureed, he says he'd rather just go hungry which I try to respect but always feel guilty about it when he won't eat anything so I keep offering different foods to the point it usually makes him mad. I find myself hiding in my car to eat some days and shoveling food down as fast as I can lol, it is crazy but sometimes the only way I'm able to get it done. I guess we all just do what we're able to, I wish it didn't always have to be so hard but it is what it is. You should definitely ask the doctors about your mom and the FTD, it sounds very much like that is what is going on and I don't think my step father's doctor would have directly told us had I not asked about it. I just called and asked about it, personally I did not want to discuss in front of him. Sending some hugs, know you are not alone in dealing with this and if you need to vent you are welcome to do so, sometimes it just helps to get it out somewhere.
 
Bemindful, he does know about the medicines he's on though they told him the Valium was for pain he knows what the Zoloft is for. That is a tricky situation with your mom not wanting to be on the meds, I try to allow my step father to make as many decisions as he can and would not want to make him take medication that would affect him without his knowledge but I guess it depends on how bad off your mom is, I would talk to the doctors and see what they think, if it is really in her best interest and you have to lie about what the pills are for then so be it if it will help her to feel more at ease.

I quit taking Celexa too, I was sleeping too hard at night and felt more out of it plus I wasn't really seeing any benefit from taking it. Now I just try to keep myself sane by doing things I enjoy between the craziness, it may be as simple as sitting out on the patio for 10 minutes on a nice day or taking a hot bath and when that doesn't do it I just drink a glass of wine (not advocating alcoholism in place of medication lol but a glass here and there does help me relax personally without all the side effects of the medication). Getting a job would probably do wonders for you to have something else to focus on and give you a purpose outside of ALS and a way to get some "normal" social time, I only work part time myself but it does help keep me grounded and is a guilt free way to get out of the house.

Katie, I got a good laugh about the Avatar living upstairs, luckily we have not had stuff like that going on with my step dad but when my mom was alive she saw all kinds of strange things I would always tell me "I know you think I'm crazy but..." Every time anything was misplaced a ghost had done it, the paintings on the wall came to life... one of which apparently had been airbrushed by King Henry XIII (because they totally had that technology back in the 1500's lol), a cheap novelty coin from an astrology magazine became a very valuable ancient Egyptian amulet, there were angels in the backyard talking to her, etc. in the beginning I tried to talk sense into her and finally learned it did no good and just let her tell me her stories while I listened, I am thankful we didn't have giant Avatars living in the house though, I am sure our grocery bill would have gone up significantly :)
 
I am so impressed at how young all of you are and how mature you are too! what you have taken on is more than most people face in a lifetime. I am sorry that anti depressants didn't work for you--it has been great for me. only 10 mg which is a very low dose but takes the edge off. I have no bad side effects or problems with it and plan to stay on it until my husband passes. But, each must do what gets them thru each day in the world of CALS and PALS.

That is what is great about this forum--Bemindful, we do understand and you can always talk about ALS to us, we are there for you and you never have to worry that we will get sick of hearing about it. (hello, we all live this crap everyday too!) and don't feel bad about give your mom the meds she needs and not telling the truth--if she has FTD she is not able to really make the rational decision needed to say no to a drug. I am glad you hospice to help you at least, be sure and get outside and take a walk when they are there--they can always call you on a cell if it is an emergency and you need a little time to clear your head and take a breath. I love the dementia daycare idea too, you could have a small break with that as well.
 
Your express it very well. Exactly what I endured for almost two years. So frustrating. No one knows until they do it.
 
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