Concerned and lost

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JOSIEM02

JOSIEM02

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Joined
Aug 7, 2009
Messages
134
Reason
CALS
Country
US
State
PA
City
waynesboro
I really need a honest answer. When we take my mother in law to clinic we hear " save your engergy". I understand she gets very tired quickly, and is loosing her strength in her hands, but heres my concern, she doesn't do anything. She is home alone during the day while we work. So her day is watching TV and feeding. She don't even really take her dog out who is her baby. So should we incourage her to do things even though we know she gets tired? If they are telling her to save her energy and she isn't active at all and she is able to do things isn't she just wasting away? I don't want her letting her life slip by while she still is able to enjoy it. Any thoughts? Am I looking at it the wrong way?
 
It's really a matter of pacing herself. I read through your other posts and could not get a good picture of what she is still capable of doing. I take it she may be able to walk, but cannot speak or eat and does not have good use of her hands.

If she is left in front of a TV all day, she will very soon feel depressed and hopeless. This happens to anyone, whether they are well or not. She needs something to stimulate her mind. Is it possible for her to get to the backyard during the day and watch nature? Does she have friends that can visit and maybe wheel her around the neighborhood. Fresh air does wonders! Does she like audio books? At least she could use her imagination while listening to a book. Does she like to listen to music?

What kinds of activities or interests did she love before diagnosed? If she liked quilting, her friends that she quilted with could come over and show her their latest project (depending on how you think she would react to something like that, you may have to mull that type of thing over).

Perhaps others will have better ideas for her.

My husband does everything he possibly can and things he shouldn't. He has never been one to pace himself and he usually pays for it when he overdoes it. But, he is going to eek everything out of life that he can while he is still able to do so!

Good luck dear lady!
 
Thank you for the reply. She is still able to walk, her right foot is a little weak. She just don't seem to want to do too much. Her dog has pretty much been her world for years and she doesn't really pay that much attention to her. Unless she goes to Walmart or the doctors or to a clinic visit she doesn't do anything or go anywhere. My husband did tell me last night that he wants to take her for a ride this weekend, the leaves are starting to change and that way she is doing something. She is now having alot of problems with her stoma bag leaking( she has an infection) where the bag seals to her skin. It won't stay tight. I understand its hard with that problem but even before that she just watches tv. What blows my mind is the little attention she is giving her dog. Angel (the dog) was the only thing she worried with before and during her hospital stays. It breaks my heart to see her that way. I know I am only the daughter in law but I love her and am lost.
 
Josie.. sounds like her symptoms are pretty similar to Glen's path. He does still try to get to the gym or out for a run/walk once a day... we get up and go to Starbucks together for breakfast.. just the changes of scenery really seem to help his mood and his energy level. Yes.. he does spend long hours in front of the tv which he never did before and recovering from an adventure takes longer,which is hard to accept for my former marathoner.

Just read your last post (came up while I was typing). Is your mom getting any medication for depression? Ignoring the dog is what makes me ask. Glen's doc started him on Celexa.. it took a few weeks to start really seeing an effect, but it's truly made a difference. I'd much rather be convincing him to pace himself, than dragging him out of the recliner chair to do something/anything! Even if she is taking something, she might need a dosage change, or to try a different med.
 
Josie ... I am going to be the devil's advocate here. I'm sure this all depends on one's age, life experiences, and personality, but not everyone's idea of the good life is constant activity. What did she do BEFORE she had ALS? I assume she is retired and was so before she became sick. Was she a relentless go-er, always running off to the mall, and lunching with her friends, and making sure she was first in line for the latest movie?

I was pretty active before I got ALS, but my favorite relaxation was still always reading. Still, even that interests me less now, because reading is so difficult ... and because with ALS, so many things that entertained me seem pretty meaningless. After I had a heart attack at age 58 and experienced being debilitated for the first time, I went through a huge depression ... then came to the realization that just being alive is quite enough excitement to keep me entertained. If I had to sit in a rocking chair for the next few years, that was quite OK. You can hear the mockingbirds from a rocking chair, and enjoy a kitty or a dog or a grandchild ... or nothing ... on your lap.

There is a lot to think about when you face death approaching you quicker than you'd like, and ALS is truly ... TRULY ... physically exhausting. Just sitting and being and resting and entertaining yourself with light stuff on TV and enjoying the companionship of a loving pet and going through what psychologists call "the necessary life-review process" is to me a perfectly adequate life style. This life-review process is essential to finding peace in your final days. First you have to make peace with the life you have lived, then you have to make peace with yourself.

You really don't have to be doing all the frantic activities that younger, healthier people fill their lives with to be truly alive. We all process our decline and approaching deaths in our own way. Wearing her out with activities she might not be particularly interested in is, in my mind, counter-productive. Walking her dog may leave her really weak, and require a couple hours to recover from it. If a trip to Starbucks perks her up (no pun intended), by all means invite her. If medications will make her feel better, great, but she shouldn't be taking them to make you feel better.

Right now, she is going through a much more profound emotional and psychological process than you have probably yet faced. If she wants to do it her way, let her. She is much more physically worn down than you may be able to imagine.

The honest answer? She IS wasting away, and she is the one who gets to decide what she enjoys and what she doesn't and what she can manage and what she doesn't want to bother with.

Thus endth my sermon for today (and aren't you glad! :lol:)
 
Again, thanks for the replies. No she wasn't retired before ALS. She was still working when this all started. She just turned 62 on Sunday. She enjoyed reading books, movies, visiting relatives when able, pretty much anything anyone would ask her to do. Like I said what concerns me is this whole dog thing. I mean she still takes her out a little and she can go outside in the backyard, she just don't. She feeds her, gives her her medicine and thats it. It doesn't sound like much but knowing her this is hugh. Sometimes I feel if I say too much it's like I am over stepping my boundry. They (family) would understand its out of concern but I worry. Beth I really don't mind sermons, I just want to do my very best for her.
 
I totally get the dog thing... if I suddenly had no desire to hang out with my dogs, people would indeed worry! Even through his depression, and dealing with his illness, Glen still walks the dogs every night and actually gets up at the time he used to when he was working so he can "feed them on time." Maybe you can talk to your husband about some depression meds and have him bring it up to the family? If it might help, it can't really hurt to ask.
 
Beth - Excellent advice as usual! That's why I like this forum - you can get feedback from pALS as well as cALS and neither feel intimidated!

JosieM02 - I would delve into the dog issue and see if it is too tiring as Beth suggested. ALS does affect everyone so differently. Can a neighbor come at intervals while y'all are gone to let the dog out and chat with her (does your MIL have a communication device?)? Look into the audio book thing, she may enjoy that immensely! You can download books from a website to your IPOD or MP3 or even a GPS unit. My husband loves listening to them, as it takes too much out of him to try to turn pages of a book.
 
I think you said your Mom in law goes to clinic in Maryland? I not that far from you, does she like visitors? I am an animal lover and maybe could plan a visit, or meet her somewhere with you? I just want you to know that we are here for her, and that if she need's someone who understands I am here, a message or phone call away.
 
Maybe she is worried about who will look after the dog when she goes - maybe she doesn't want to be attached to something she loves so much, too much of a reminder of the little things she now cant do. Just trying to look at it from a different perspective for you. My mum was out every weekend with friends and loved to read and would talk to everyone and anyone. These days she would rather sit in front of the TV and just be comfortable in her own place. She doesn't ask me about her three little grandkids, and does not seem interested in too much else, but I think it is because she doesn't want to think about what she will miss out on later. I'm trying to create memories for today - her memories are what she used to do, not what she cant do now. (Hope that this makes sense?)
 
I can understand how worrying it must be seeing your mother-in-law take such little interest in the things that have always been the most important to her. With my mum so recently diagnosed I am often feeling completely powerless to "make things right for her". Something I read in one threads here keeps coming back to me, and that is to let the person who you are caring for lead your response. I need to not always make things right for my mum, even if it will make me feel better to do so. Sometimes, she just needs to be really down and cranky...put her head under the covers and stay there for awhile.. and that's ok. I think, however, if things seemed down and really unhealthy over a long period, I'd probably speak to her Doctor for some advice... All the best with you and your mother-in-law and all the family...
 
I am In the process of finding out what is wrong with me, but I really think I have bulbar als----seems all the symptoms fit---and are getting worse---i have two small kids---im so scared, depressed, anxiety ridden, fearful, lost and upset----how do you guys function on a daily basis with any sort of pleasure and sanity? Please help me. I'm finding this extremely hard and am soooooo worried about my kids.
 
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Let me just say THANK YOU. I knew I would get the right answers, ideas. MtPockets great pictures. As for a communication device, she has a loner from the clinic. She is waiting on hers to come. Brooksea, what is the audio book thing?
 
Oh my gosh AL, what lovelies they are. They are the great equalizer's.. They could bring world Peace...:grin::grin::grin:
 
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