New caregiver in need of some support

[TRLESH@YAHOO.COM]

I found this forum about a month ago when I first learned that my mom was diagnosed with Lou Gerhigs. We decided it was best for her to come live with me. I just recently moved to Hawaii to live out my life's dream, and I haven't been here a year yet and now I'm caring for my mother. I'm 42. I know this is the right thing to do but I'm struggling with this new situation. I am a very independant person and always have been. Now I'm afraid I'm going to lose myself caring for her and it scares me. I try to remember that she is also scared and not to think of myself in all this. It is SO HARD to do. I want to scream. Maybe it is just an adjustment period and hopefully it will help to talk to people who have experienced the same thing. I appreciate any and all suggestions and advice.

Tracy

[anneinma]

Dear Tracy,

I am so sorry for you and your mom. My husband recently passed away from LG. He and I were both very independent people. It was very hard for him to give up his independence but I was able to look at each day as a gift. I felt privileged to be able to help him in any way I could. He had read that caregivers sometimes get resentful and he worried about that. I never once felt that way although it broke my heart to watchi him deteriorate.

One thing that helped was having some others around as support. We joined Hospice early on. There is a group in our area called "compassionate care" and they focus a lot on caregivers. I also got him an alternative therapist who came to the house 3 mornings a week. She was willing to negotiate a really reasonable price as our insurance didn't cover that type of therapy and she really cared about what she was doing. Between the hospice visits (even though at first we didn't feel that my husband really needed them beyond socially) and the 3 mornings per week alternative therapist, I did not feel like I was carrying the burden alone. I often went out when they were here. My husband was also able to be by himself for a couple of hours at a time so I could go to my office now and then.

Someone whose husband is dying of cancer said to me recently, "each day is like a gift". I think if you could try and consider it a gift for you don't know how long you have with your mom. My husband passed away very suddenly, less than a year after his diagnosis.

I hope I don't sound preachy. If you reach out and try and get support that will take some of the burden off you.

[fiddleplayer51]

Tracy,
I think too that it helps to think of each day as a gift as you care for your mother. That's not always easy to do depending on things like how much rest you are able to get, how much help you are able to line up, how rapidly your mother's illness progresses.
But I think that the dynamics of caring for one's mother are quite different from caring for one's spouse. Your spouse usually has been living with you all along and the life you're living has been yours together. Whereas your mother has come into your space to live with you and your life is no longer your own. It can make you feel so confined and maybe even trapped. And of course the relationship you've had with your mother prior to this illness is a factor too. You moved to Hawaii less than a year ago to live your dream life and now your independence has been taken from you. Do you have siblings or other family members who can help?
To begin with I think you should search for resources available to you: the ALS Association and MDA in Hawaii, support groups. Is there an ALS clinic in your area? What sort of help can you get?
I can assure you that through it all when this is over, you'll never regret having cared for your mother. You will look back on this experience and the difficulty or even hardship you may periodically feel as you care for her will recede with time and eventually be lost from memory.
There are others on this forum who have had their lives interrupted by a parent diagnosed with ALS whose care they've had to assume. Hopefully, some of those CALS will share some of their feelings with you and offer insights into how to approach this new turn of events and navigate through it.
I wish you all the best. I'm so sorry about your mother. It's got to be so hard for her. Take care and please post back whenever you need to. You can say anything you need to and vent. People are incredibly understanding here.
Best wishes,
Jane

[TRLESH@YAHOO.COM]

You don't sound preachy and I appreciate you sharing your experience. I suppose I might feel differently about it if it were my husband or such, but besides being independant I've also never been that close to my family. I do need to find an outlet not only for myself but for her as well. I'm sure she is not that thrilled with her world becoming so entwined with mine except that she doesn't want to be without any family. She looks to me now and I'm pretty happy being alone. I want to get her involved with other people for both our sakes. I really appreciate your kind words of wisdom and I'm very sorry to hear about your husband. God be with you.

[TRLESH@YAHOO.COM]

Jane,

You hit the nail on the head. What you said is pretty much what I'm going through and how I feel. I do have a slightly older brother but he is in no position to care for her. He works too much and has another roommate so that situation would not work. I work from home most of the time and I'm going to have to stand my ground in order to keep that job through this. I'm not retired so I have to work and can't be attentive 24/7. We'll manage. Like I said I think it is still "growing pains" right now and the urge to scream out weighs being able to look at each day as a gift just yet. I'm sure you can understand.

Mahalo (thank you) for listening to me :-)

Tracy

[fiddleplayer51]

Tracy,
I do understand and I sympathize. Not having been that close with your family you're in a tough place, and if you thrive on being alone, that's even tougher still. But, I don't think you'll lose yourself through this experience. You may actually find that you gain something and not even realize you've gained it until years down the road. Sometimes we encounter a new turn of events in our life that at the time seems like the worst or most inconvenient thing that could ever happen, and then later see it as a gift or a stepping stone to something of value we may not even have been looking for; something we are eternally grateful for and wouldn't part with for the world.
I hear you loud and clear that you'd like to just scream right now and that's okay. Let it out and be honest about how you really feel because it doesn't do any good to deny your feelings. It's important to acknowledge them and I admire your honesty in describing your feelings here on the forum. This new set of circumstances also seems to come as a threat to your job and that makes it all the more difficult. Hopefully, you'll be able to line up the contacts and help you need. I'm sure you'll work things out and manage just fine.
How is your mother's ALS manifesting itself at this point?
I wish both of you all the best and please continue to post.
Jane

[swi71]

Hi Tracy,
Caring for an ALS patient is tough--but I agree with Jane--you won't regret it. My husband has had ALS for 6 years now and we've kept him at home. However, we do have a 24/7 caregiver at this point. When he just started having trouble and couldn't be left alone, we just had someone come is a few hours a day. If you can manage this it helps you from burning out and helps you keep your job and some independence.
God bless.
Sharon

[TRLESH@YAHOO.COM]

Tracy,
How is your mother's ALS manifesting itself at this point?
Jane

About the time I moved here, last November, she started having trouble lifting things with her arms. The doctor wasn't sure what the cause was but gave her some physical therapy routines to follow. After several months she wasn't getting better at all. Then the diag came in as LG. It followed her 75th birthday. She is able to lift a half filled water bottle with the help of the stronger hand over the weaker one but nothing heavier and not for very long. She bends over to drink from a straw rather than lifting it. There are no pull-over blouses just button down and at that she has to bend over so the buttons come to her versus having to reach up to close them. She can't button up beyond her waist really. Nine out of ten times I have to help her lift up her pants and under garments after using the restroom and I help her take showers. She can feed herself but has to lower her mouth to her fork rather than lift the fork to her mouth and I cut up the food.

Not sure what will be next but now that she is here we are going to find her a new primary care doctor.

Jane, I really appreciate the words you shared with me earlier today. I went for a long walk and thought about what you said. I know you are right that some how a very valuable lesson is coming from this. Between the mental support and physical activity I returned to my mom in a much better frame of mind. I worry that she is able to feel my anger and I don't want that. It is not her fault, for any of it. During my walk I addressed my father who passed away from congestive heart failure four years ago and just told him that honestly "I'm not happy about this at all". Just saying it and believing he heard me felt good. That might sound warped but not if you believe that those who have passed on still see and hear us but register information from a spiritual understanding versus our limited human one. It was more a cry for help to him than just sounding mean and he knows that. He and my mom planned everything they could so they wouldn't "be a burden" to their children when they got older but you can never plan for everything. One darn day at a time and I know he's trying to help me cope so I can do what is best for both her and I.

Again - Mahalo!

[CindyM]

Hi Tracy- I thing you are going to cope very well when the shock wears off. I say this because it takes enormous courage to admit to strangers how you feel right now. And I want to thank you for being so open. I am sure others have felt this way as well.

Please continue to have some personal time for yourself. Those of us who appreciate a lot of personal space cope best when we are not overwhelmed, and being solely responsible for the total care of another is very overwhelming!

Some CALS have recommended a book, "Share the Care." Maybe this will give you some tips. The more you spread around the duties, the better off both you and your Mom will be. She is entering a phase where she could become socially isolated and you, don't forget, will need time to work! Plus you want to be able to keep up those nice long walks! Nothing like a little exercise to relieve the stress. :-D

Please check back in often. we will help in any way we can! Cindy

[anneinma]

Hi again Tracy,

Is there a hospice in your area? Your primary care doctor can get in touch with them and they can provide assistance for your mom when she showers, etc. They were very compassionate with us (they have resources for the caregiver and the patient). These services should be covered by Medicare. Please try and get some assistance. Taking care of you is a big part of your difficult situation.

[fiddleplayer51]

Tracy,
It sounds as if you've got what it takes to work through this. Several of the things you've said make me believe this:
1. You "worry that she is able to feel your anger and you don't want that." To me that shows you're a sensitive, thoughtful, and kind person. The fact that you have that concern will carry you far during this stressful interlude of your life. It may not always be easy to carry out that core concern in your actions and behavior, and resentment is bound to creep in periodically, but it will constantly be checking you and guiding you as you have your mother in your care. I really wish you courage and strength for the duration.

2. You can address your father about your true feelings and sense his awareness and presence. Believing that he hears you and knows that your dialog with him this morning is "more a cry of help than just sounding mean" will help to sustain you during this ordeal. I believe as you do that those who have passed on still see and hear us. I think you are fortunate to feel that and to feel a connection with your father. I wish you much comfort from that connection.

3. Recognizing and admitting that your mother is not at fault for any of what's happening to her will help you be compassionate when caring for her. Our PALS whether they be our mother, father, spouse...whoever they may be...are losing everything. Their life is falling apart. Everything they have is being taken from them. There is no mercy. As they weaken and lose the ability to speak or do anything for themselves, they need the assurance that they will not be forsaken or forgotten; that they will be assisted to a peaceful departure. It's the least we can do for them.

All of this means too that we CALS must take care of ourselves, eat well, rest when we can. Keep on taking those walks and getting out of the house for a short period daily. This is going to require help from others.

There's a thread in the General Discussion forum called "forming a care team" which has some excellent ideas for recruiting help in the care of our PALS, and just as Cindy mentioned, "Share the Care" by Cappy Capossela and Sheila Warnock, is full of information about organizing group care.

All good wishes to you, Tracy. I hope the best for you and your mother. I know you'll do well as you work your way through this and I hope you will continue to post.
Peace,
Jane

[TRLESH@YAHOO.COM]

Has anyone ever felt or been afraid they were being taken advantage of as a CALS? I will go to the ends of the earth if my mom needed me to, but take advantage of me and I bristle. My mom will ask me to get things out of the refridgerator for her and I do it, no problem. The other day she walked into the kitchen and pulled the freezer door open and grabbed a handful of ice cubes. I took a double-take but dismissed it. Today we stopped to buy some home baked cookies she pulled some money out of her purse then proceeded to put the money on the counter with her right hand and almost made it up but couldn't. I told her to use her left hand as that is the hand she grabbed the ice with. She claimed she couldn't do it with either. That counter was no higher than the bottom of the freezer. I was fumming. In the past she's asked me to cut her meat up for her but today she ordered steak for lunch and before I knew it she was cutting it herself. I had a talk with her yesterday because my anger was getting the better of me. She has said it is good for me to get out with my friends, and I said "ok...but if I do that and you can't get your underwear up what are you going to do?" She tells me she can do it by herself if she lays down on the bed, so I get very resentful when she presents her backside to me to do it for her. Or she plays the marytr and says as long as she has food and water she'll be okay if I have to leave her. I told her to knock it off because I wouldn't deal with it. I gave her three options when I have to leave the house: accompany me and deal with the hot summer conditions (as I don't always have a choice myself), stay at home by herself with the A/C and drop the guilt trip, or we get her outside help to stay with her. She said she's not ready for outside help. So unless she wants to sweat, she'll figure out how to right her underwear while I'm gone. She explained that she was able to get out of the house at least four days a week before and I said "yeah, with the help of four different people. It is just me now 24/7." She's got my A/C running (2 units 6 hours a day) even when she's not in the room. I told her as long as she's paying for it she can run it until the units fall apart.

God will have to strike me down with a major attitude adjustment or I will go insane. The way I'm feeling about this has to end because it feels like a major nightmare that won't end for years unless I'm silently praying for my mom to die. It is a no win situation.

I'm not asking for any advice or replies. I started to post last night and thought twice about it. Now I just want to scream it out just for the sake of getting it out.

[fiddleplayer51]

Tracy,
Sounds like you've got a tough situation on your hands. It's pretty bad to feel as if you're being taken advantage of. I don't know what kind of resources you have there, but you need to line up some backup or you're not going to survive this. I know I'd feel angry if I felt as if I were being taken advantage of. I really feel for you. It sounds as if having your mom under your roof is going to be more than you can take.
How long has she been there and is she sociable? Does she make friends easily? Do you know people her age? Is there a support group of any kind near you?
Hang in there and do all you can to get assistance with your mom. I really feel for you and I feel for your mom, too. If I was your neighbor, I'd try to help you out.
Keep us posted.
All good wishes,
Jane

[CindyM]

I am not saying your Mom is not manipulative- I don't know her.

I do want to explain that some days I can do things and others I cannot. For example, I have been climbing stairs for over 60 years now, and old habits die hard! :-D So it never occurs to me not to try. Some days my legs accept my weight, others days they do not.

I don't think you become paralized all at once. Could be wrong, but my best guess is that loosing strength is a process.

[kanorman]

Tracy,
I agree with Cindy, there are days when I can cut my food and there are days when I can't. Sometimes I can hold a cup, other times I need someone to hold it for me. I know in my situation it has helped when I let those who are helping me know where I am in terms of my strength at any given time. I keep you and your Mom in my thoughts. Hang in there!
Kathy

[fiddleplayer51]

Thanks, Cindy and Kathy. Those were helpful responses and I think my PALS husband has experienced some of that too. I appreciate your insight and didn't really know how to advise Tracy except from my limited vantage point as a CALS.

Tracy, I'm not jumping to the conclusion that your mom is manipulative because I obviously don't know her either. I just wanted to let you know that I understand how you might feel as if you were being taken advantage of. I do hope you can find help and I hope that Cindy's and Kathy's responses will help guide you. I really feel for you and think you are going to learn to manage this situation as soon as you get some logistics worked out.
All good wishes,
Jane

[TRLESH@YAHOO.COM]

Thank you Cindy, Kathy, and Jane,
I need to hear it all. Don't worry..I'm not going to do anything drastic. Last night I emailed the national ALS association to help me find some local resources for the both of us, and also found a local caregiver association. Just waiting to hear back.

Thank you for your help and support when it seems there is no one else around.

[MtPockets]

You sound like a wonderful daughter that any parent would be proud to have as their child. Your mother is blessed to have you for a daughter.

Just another point of view as one who has ALS. I also have days where my arms will not do what I tell them to do, and yet days where I can cut my meat with no problem. I know it sounds strange to someone who has not experienced this, but it happens. My poor wife never knows what state I will wake up in, so when I need her to help me dress I call her. Other days I manage to move my clothes with the help of a cane or pick up stick, and dress myself. When it comes to putting on shoes, I always need help.

It might appear to her I was fickle and just playing her for pity, if she did not understand the use of parts of my body varies. For example, my legs, I cannot walk. They never vary, but there was a time in the progression of the disease when they did.

I hope this helps you better understand what may possibly be going on with your mom?

You do need time for yourself or you will burnout. Make time each day, each week, for some time for yourself. If that means hiring a caregiver, or getting help from hospice, do what you have to do, but get your own time, for mental rejuvenation.

I think that is what they mean by re-cre-a-tion. Get it? Recreation, means time for you to renew yourself, your mind.

If it gets to be too much, always consider a care giver home for your Mom, before you make irreparable damage to your relationship. After all this is done you want to have her leave this earth with a good relationship with you, so you do not feel guilty, after she is gone.

Some people just cannot handle the pressure of a full time care giver role. You have to decide for yourself where you draw the line and get other help, before it comes to that point.

[fiddleplayer51]

Tracy,
I'm glad you are taking some steps to locate help and resources. I know you have what it takes to handle this situation and turn it into a postitive experience. Good luck with everything and keep posting and letting us know how you are doing.

Capt. AL,
You always have such kind and understanding advice for others. You're a wonder and I know countless people have benefitted from your helpful posts. Thanks, and I hope you are holding up okay these days.

All the best to you both,
Jane

[sschult]

Hi Tracy,
Muscle loss is a slow progression and your mom will have various amounts of strength from day to day. It sounds as if you need to seek outside help. If you have any close friends or family you can count on, tell them that they will have to help you. It's best to get outside help involved early. I was the only caregiver for five years and it drove me into a nervous breakdown. Don't beat yourself up just because you get angry with your mother. It's normal. Seek out a local Hospice agency. They will be able to give lots of support. Usually they have home health aids to help with bathing, a nurse to make home visits and bring medications. They can also provide your mother with lots of equipment. Even with Hospice help, they can't stay for long periods of time. So you need to seek help from friends or family. If you do it early, you will be able to train them as you go and get relief from being the only caregiver 24/7. Your mother needs to be told that you can't do this without outside help. I'm sure that she doesn't want to be a burden. This is no ones fault. For your own well being, seek help. I regret that I didn't insist that my husbands family help me. He now resides in a nursing home. I wish that I had insisted that others help us. You can't do this alone!!
Take care,
Shari

[sharonca]

It is true... somedays things work and somedays they don't. And most of the time I should ask for help and I don't because I don't want to be a pain. And other times I just ask because it is too much effort to get out of my recliner and do it myself. I find that when friends are over and ask if there is anything they can do for me I say no. I'm too embarrassed to have them see my messy room that I can't clean up in order to get to the laundry that needs to be done. The whole thing just sucks big time. And when I try and land on the floor I sit there crying - not because I'm hurt but because I'm just mad. Anyone else hate ALS as much as me - oh yeah, you all do.

Sharonca

[Al]

Hi Sharonca. A friend of ours died a while back. We were at their house the next day and like all good friends my wife said, let me know if there is anything I can do to help. The friend hesitated and Lee told her she would do anything required. The friend said , laundry. The kids need clean clothes to wear to their dad's funeral and she hadn't had time to do laundry. Lee did a bunch of loads. Now she just offers to do laundry when stuff happens. Sometimes when friends make these offers they really do mean it. They probably know you're having a tough time of it. They'll understand the mess. Take them up on the offer. They'll feel better and so will you.
AL.

[CindyM]

We are the house where everybody gathers for holidays. I love to cook and entertain so this always worked out well. Two years ago, when I first started gettng sick, people asked what they could bring for Thanksgiving and I told them honestly. I thought I had the perfect menu planned, all brought in by diffferent guests.

But I was dissapointed when the mashed potatoes arrived in time for dessert and the person in charge of appetizers forgot her duty. But guess what? Nobody cared. They were happy to be together, and probably happier still not to have to take on the whole job.

And it was a measure of progress, of sorts, for me. I am going to have to get used to asking, and accepting help, in whatever form it comes.

[TRLESH@YAHOO.COM]

Dear Cindy, Capt Al, Jane, Sharonca and Shari,

I just wanted to thank each and every one of you for taking the time to share your experiences with me. You are all wonderful people! Sorry about my previous meltdown and thank you for not judging me harshly. Instead you gave me support, understanding, and helpful knowledge in such a way I've never known before. I hope one day that I can return the favor in the loving manner in which you've shown me.

A quick update: I woke up this morning and all the anger was gone. I thought "I can do this!". We went grocery shopping to buy food that she likes so while I'm away from home tomorrow working (just one day a week I have to travel for work) she will have everything she needs. We solved the water bottle problem by buying an inexpensive pitcher that is easy to get water from in whatever amount she wants without spilling. I mixed her morning protein drink tonight so she can just get it out of the fridge. We are going on a dinner cruise Friday night off Waikiki to watch the fireworks in Honolulu. And SHE made the effort to conserve the A/C for when she's in the room, did her best to facilitate the undergarments with little help from me, and wanted to carry what she could from the store (I let her but it was just the light stuff).

I think if we can work as a team for as long as we can we'll be fine. As for help from family, not going to happen as it us just her and I. Brother lives in Calif. Friends...well we sort of left them in Calif too. I have a neighbor couple that I've made friends with when I moved here, but he works alot and she's been visiting family in Chicago since May and doesn't come back until the 15th of July. I'm still hoping someone from our local support association will contact me. If not by email soon then I'm going to call them.

So THANK YOU for being "here" and for helping me to pull my head out of you know where. :-)

[MtPockets]

Please do not beat yourself up too much for sharing your heart. That is what we are here for, to help you through the rough times. I am glad you feel you can trust us with what you feel.

It just feels good sometimes to know someone is listening when we blow off steam. Your doing fine dear. Keep up the good work, but remember find some time for yourself or you will burn out. We all have been there, done that.

Jane, thanks for your kind comments. We all just do what we can for one another, while we can.

[fiddleplayer51]

Tracy,
Thanks for telling about waking up refreshed and about the outing with your mom. It's great to feel as though you're getting somewhere and have a handle on things. I know you're going to work this all out and get through this just fine. That's not to say you won't have days again when you feel frustrated and overwhelmed, but you know those feelings come and go and it's perfectly normal. We all have times when we feel on top of things and able to handle our circumstances and then we have other days when we cry, cuss, think the worst.
Hang in there! You're going to make it and your mom is so lucky to have a daughter like you. She's obviously sensitive to the impact her presence in your life is making, but you will never regret having done this for your mom. (Think of all we put our moms through when they were raising us! LOL!) :oops:
Vent whenever you need to and say anything on your mind. We hear it all here and understand.
All good wishes, Tracy.
Jane

[beachbaby]

I hate to sound morbid and blunt, but my dad has been suffering from this for five years. We feel so blessed that he has made it this far. It's the hardest thing I have had to face in my life. I have a life and two small children as well as my dad to take care of and it is mentally stressful, but do what you can to keep a positive outlook and to help your mother do the same.

Blessings.