What do you do when it comes to full time care?

[duplinwino]

It's been weighing heavily on my mind these past few days as my husband gets weaker and weaker and I wonder how much longer he will be able to stay home alone safely. He lost use of his right arm some time ago and his legs are unstable, though he's not in a wheelchair yet, I don't think it will be too much longer. His left shoulder has atrophied so he's not able to raise his arm and the muscles in his hand are becoming weaker. When he loses his left arm, he will be very dependent of course. He has no swallowing, chewing, or respiratory issues, only weakness in his limbs.

I work full time, always have. I carry my, his and our daughter's health and dental insurance (Medicare kicks in for him July 1). We won't be able to make ends meet with his SSD payments. I have to work. But I also need/want to be able to take care of my husband.

I know with 100% certainty that he will not allow someone in our home to help him when he really doesn't like that I have to do it and becomes pretty cantankerous. And truth be told, I don't want that. I want to be his main caregiver while I can handle it.

Any creative ideas, suggestions, thoughts are appreciated!

[beaner1]

Hi Duplinwino,
Your question was also my biggest concern - I work full-time too - can't afford to stay home as we need the money, and my benefits! My husband didn't want help either - stubborn SOB! - my kids and I were terrified to leave him alone, but sometimes had no choice. We had many battles about this very thing - thought I was going to lose my mind with worry, my kids were on the verge of moving out because of the tension and stress - it was not pretty!

What finally happened was my husband had to be hospitalized because of pnuemonia, and a heart attack (from the stress of being sick!) - he was in the hospital for 83 days. When it was time for him to come home, I refused to do so unless we got some help and proper equipment - I just couldn't do what we did before! He was unable to move, couldn't eat, breathing was terrible, etc. I now have a nurse for 4 hrs. in the morning, and a home care aide for 4 hrs. in the afternoon. My daughter is home until the nurse comes, and I'm home when the aide has to go - he can't be left alone at all anymore. Things are so much better - he's receiving the proper care, and my kids and I aren't so stressed out - plus, I do think he's happier too knowing that help is there if he needs it.

We were lucky in the sense that our health region provides funds for a home care aide (cheaper than hospitalization, you know!), and our insurance helps pay for nursing - don't know what else I'd do as we don't have family nearby that would help out - I'm grateful that my kids are still around to help - they are so wonderful to their Dad (and me!). We went through hell before - so glad that's over!

All I can say is that the reality is that you will need help - and very soon - what happens if he falls, and can't get up? Not only that, but you run the risk of becoming ill yourself from burnout - no one can do everything. Maybe if you have a frank discussion about the situation? I know it didn't do me any good! I wish you all the best - it's a tough situation - for both of you.
Good luck,
Beaner

[duplinwino]

Thanks Beaner. Stubborn is an understatement. He was an active, strong willed 30 year old going into this, so like everyone else in this situation, he takes his inability to do things any longer very hard and is extremely frustrated by it. His family was supposed to move closer this summer but that fell thru. I don't think they realize how bad off he is. My family is close by, but he denies help from them. My mom comes over on nights that he has lodge meetings and is gone for the evening so she can help with the housework. It's getting ridiculous. I have the neighbor kids come over and weed eat the yard and I do the best I can otherwise.

Anyway, you're right, I don't know that talking will do any good. Sigh. Thanks though.

[jimercat]

It really saddens me to read y'alls stories.

If people could only walk a mile in our shoes, I think we'd have more help, both "physically" and "financially!"

Most people go about their daily lives with no substantial worries, except the price of gas maybe.

My husband had me call the company that supplied the cough assist machine, because they were charging such an outrageous price monthly and when he got the machine they didn't discuss charges. They will be picking up the thing, but we have to sign a release. I figured up the expense, and just our copay over the allowed billing cycle will practically pay for the d@#% thing. The amount Medicare pays the company is ridiculous and just reeks! He was so steamed about this and like a mad hornet. We now have a loaner from the ALSA and he is happy.

I've had to get a part-time job, so I can pay for insurance for myself and son. I don't know what will happen when my husband can no longer do for himself. I keep telling myself that his family will somehow help. But what will happen to insurance, as he is the same way- doesn't want anyone else caring for him but me?

[beaner1]

CJ and Duplinwino,
You're so right about the "mile in our shoes" - if only people knew what we all go through! Very few people actually do help out - those that do are angels! I know that the only way I get through this is to just worry about one day at a time - that's all I can handle.

CJ - you are so right about gouging by these damn companies - we have the same thing in Canada (unfortunately!) - don't know how they sleep at night, and I don't know what we'd do without the ALS Society. We certainly couldn't afford to buy this equipment.

My husband is quite progressed - he can just barely feed himself - has not been able to walk for almost a year, can't sit up by himself, is gradually losing his voice, almost lost the use of his hands and arms - we have him at home since he was released from the hospital - my livingroom is now a hospital room. It's very difficult at times, but I do have help (Thank God!) - there's no way I could manage otherwise.

I wish you both luck with your husbands - hopefully, they'll realize that you need assistance to care for them - sometimes if you have a meltdown in front of them it helps (not that I've ever done that :)).

Isn't great that we have this forum to go and talk with people who really do know what we're going through?
Beaner

[duplinwino]

That's horrible about the cough assist CJ, but glad you could get it thru ALSA. They are a GODSEND. The first time I called to get some information, the lady was on the phone with me for over an hour, very helpful, very compassionate. I later inquired about a walker and powerchair from the loan closet and Brian had those two things within three days, delivered to our door. Just AMAZING. I can't say enough about them.

Thanks and hugs to both of you

[jimercat]

Is that your daughter? She is beautiful!

[kelly]

Seems like we have a group with young husbands here. I could totally relate to your posts. Also think the ALS center is a godsend. They have been so helpful as a resource. My friends constantly ask me how they can help. Well, I have finally given in..and allowed people to help me. Juggling two little ones ..and this disease can be a struggle. I just hold on tight to the "good days". Thinking of you all tonight. Fondly, KR

[CindyM]

It is hard enough taking care of a young family, never mind a PAL as well. I am so glad you guys found each other! You are so right that some people only have to worry about the price of gas. Life is unfair and the best we can do is the best we can do, it seems. Again, I am glad you have each other to lean on! Cindy

[duplinwino]

Thanks CJ! Yes, that's my Sara. She and your son are a year apart or so I think? She turns 9 in September.

[Tganz]

Hi to everyone on this thread. (It's just what I needed)

I like you all face the same issues. Husband is stubborn. In terms of his conditions progress it is moving relatively slowly, he has no issues with eating/swallowing etc in this respect he's as healthy as an ox. Left leg is very very weak, right leg and arms are progressively getting weaker. We seem to be very lucky here in NZ with the support we receive from the MND association. Have received all of our equipment on loan from them free of charge ie, bi-pap machine, electric bed, electric armchair, wheelchair (manual) has been fitted for an electric wheelchair also compliments of the system we have in place here. Ramps and wet shower area have been installed at home and paid for by funders upon the recommendation of our medical team everything in this respect has been wonderful. We have been given up to 24 hours per week for home support services which we have not used yet. I don't feel it is right to take advantage of that just yet. We have 2 teenage boys at home and a 10 and 7 year old. I work 30 hours a week and husband receives what we call here the sickness and disability benefit. (Which an ant couldn't survive off let alone a family) However I know there will come a time in the not too distant future when we will have to use this service.
Just want to say thankyou to the person who started this thread it is something I have been fretting about for a long time. Will read and learn from everyone here.

God bless everyone, take care of yourselves as well as your PALS

[Al]

Speaking as a PAL, the first time I went to a support group meeting there were 8 or 9 of us plus husbands or wives in the room. The biggest topic of discussion was MY GOD what will happen when I can't wipe my butt any more? I'll just die! Well that came and went. I'm not dead. I have strange (but very nice) ladies come and shower and dress me every day now. We laugh and talk and it is no where the big deal I thought it would be. Tell your husbands that if the tough old fire Captain from Canada can do it they can. It's really not as bad as you think it will be. I will admit though that I draw the line at my men friends holding the urinal for me. Wives are ok. LOL
AL.

[CindyM]

Thanks Al for explaining why some guys might be reluctant to have help come in. I guess it is different for the ladies. LOL once you deliver a baby you lose all sense of modesty. At least some of us did. :-D

I never once have thought about who would clean me up. I worry that they might leave me on the potty for an entire Red Sox inning, though. And if the Patriots were on I'd have to pee in my chair, LOL.

[duplinwino]

LOL! Thank you Al and Cindy, that just made my day!!!

[sharonca]

One of the first things I thought of when contemplating the loss of my hands was "who's going my wipe my butt?". I was so thrilled to hear about the bidet toilet seats. What a great idea! And my friends are pretty happy too!

Sharonca

[CindyM]

Good one, Sharonca. I bet my friends and family would like me to get one of those bidets, too! :-D

[sharonca]

Check out the bidets on Home Depot. Or google bidet toilet seats. The cost is from around $400 to $900. I'm waiting on my insurance money and then I'll be spending away remodeling my house. The toilet seat is the first thing! Gotta get in some practice.

Sharonca

[nurburch]

Hi all,
I am so glad that I read your post today. I am facing these same issues with my husband. He doesn't want
anyone else doing anything for him either, but he is not being very nice to the kids and I. This diease sucks
the life right out of everyone involved. My kids shouldn't have bare this rough road. I am considering getting
someone to come in and help. The stress level in our house is off the scale. My husband was dx nov o6 and can't do anything for himself now. He is in his wheelchair all the time and we take care of everthing. He is
or appears to be so ungreatful. I am so glad that we are not alone in this......i feel awful. I too have to
work fulltime and take care of the kids and their sports ect. Maybe it is just too much now. going on two
years. Well thanks for sharing and listening. May God bless you all.
sheryl wife of scottie

[duplinwino]

Sheryl, I feel that way too some times, that Brian is ungrateful. I feel like hired help that he barks orders to when I'm doing something for him (manual jobs he used to do around the house) and I feel he expects more out of me then I'm physically able to do. I'm a small girl!! But honestly, I think it comes down to him still being so angry and frustrated that he's not able to do it himself so it's taken out on me. When I talk to him about it, he hasn't a clue that he has spoken that way or acted that way. I keep telling him I'm going to record him and I may just yet!!!

[cukita99]

as wives, you are all wonderful and your husbands should all be glade they have you and realise how lucky they are. my husband left me for some one else when i started having problems. my son was 14 back then. he helped me a lot. he said he would never wipe my butt. but when the time came he did it, and told me thats how much i love you. i finally had to hire help. he still helps me on weekends . he is now 19, and i wish he would have a social life but we cant afford to pay for weekend help. i already pay for help monday-friday and now my helper wants more money. i have four sisters and three brothers and would just like a visit onces in a while. my parents help me on weekends but they want my son there too. they dont understand what my son goes through.

[nurburch]

It is so hard for our children to bear the burdon of caring for their father or mom. It
does take alot of their kid time, but I now that i am grateful to have them willingly help
me with their dad. Just wish I could find a way for him to deal with the changes that
come. My husband is so angry, that he too doesn't see what havoc he creates with
being mean and hateful. I am praying that the answer will come. I am sorry to hear
that you aren't getting much help from family. I am currently doing everything for
my husband. I think his family would like to help, but how and when is another
story. I will keep you all in my thoughts and pray for all of us. Thanks for sharing
and caring.
Sheryl wife of scottie:)

[swi71]

Hi:) This is my first time saying anything here--I've just read a few things. I feel like a real newbie, but compared to some of you, I'm an old-timer. My husband was diagnosed in 2002 with bulbar on-set ALS. We now have a full-time, live-in caregiver. I, too, work full-time. I also don't have the strength to take care of him (he still weighs 175lbs). He can't walk, talk or take care of himself in any way. Fortunately, I got some insurance money (early death benefit from a life insurance policy) that helps pay for this. Depending on your financial situation, some states have programs that help pay for unskilled (i.e. duties that aren't handled by a nurse) care.
Like some of the posts I read, my husband was hard to live with (and so was I) when he was first diagnosed. It was really hard on the family--we still had two teens at home then. Sadly, we did not realize that for him it was part of the disease. You see, with his type of ALS, there was cognitive impairment (dementia). He shut the family out, but tried really hard at work and at church. It took me too long to realize that it was part of the disease.
Have you read "Good Grief"? It's a little book our counselor gave us that explains the grief process. That helped me to understand what we were going through and to cope a little better.

[CindyM]

Hi swi71. thanks for the tip. And thank you for joining us. How is your family coping lately? this disease takes its toll on everyone, I quess.

[swi71]

Thanks for asking. It would take too long to tell you everything, but we are doing OK. My oldest son and his wife and daughter live with me, which helps with many things, but is hard on them.
I guess one of the reasons I came looking for this group is for some new help and answers. Gerald was diagnosed in summer of 2002. He did fairly well for about two years, but with ALS and FTD, I finally had to make the decision to make him quit work in 2004 (he was in a safety-related field). His employer would not lift his load and I was afraid that the pressure of his job, (plus the safety concerns), would cause the ALS to progress quickly.
Basically he still did well until about October of 2005 when he really started to go downhill. He had already lost the ability to communicate, but in about 6 months time, he also lost the ability to move on his own. A emergency room doctor in spring of 2006 told us that we could expect him to make our younger son's graduation (May 2006), but no way would he make our daughter's wedding (12/06). To make a long story short, not only did he make the graduation, he also made the wedding. Now, a year and a half later, he seems to be about the same as he was in 12/06. He does not have a PEG (his choice before he lost the ability to communicate), but still can swallow and has actually gained weight.
He is contracted and we go to the Rehabilitation Institute of Chicago tomorrow to find out about botox treatments for the contractures. I guess that's where one of my concerns right now. I haven't checked any threads on this yet, but was wondering about what to expect.
Sorry--this is long. I appreciate any help all of you can give. Seems like there are a lot of caring people on the site.
swi71

[sschult]

:confused:Hi everyone, I just joined this forum today. My husband (Alan) was diagnosed in June of 03. He progressed slowly and when it came time for full time care I tried to keep working and run home twice a day. I couldn't afford to stop working and lose our health benefits. I really got burned out quickly. My family lives 2 hours away and will come help me at the drop of a hat but I didn't want to bother them. Alan's family doesn't help us at all. He has 4 brothers and 4 sisters. I don't understand this. They should be beating down our door asking to help out. I guess they just don't know what to do. Anyway, the reason that I responded is because I know exactly what everyone here is going through. In answer to the question about what to do when it comes time for full time care, just start telling people what to do and make them understand that you can't do this on your own. I never solicited help from others and regret it. I still have problems with speaking up. Unfortunately, I ended up having a nervous break down and really lost my ability to function. My sister saved me. My husband now resides in a nursing home. It's something that I never thought we would have to do. His family still has not stepped up to help. They say they don't like to see him like this. DO THEY THINK THAT WE LIKE IT!!! I forgot to mention, he has lost the use of both arms, hands, legs, and feet. He can no longer speak and has a very low lung capacity. He has a lot of trouble eating. All of his food needs to be ground up to the consistency of pudding. He refused a feeding tube. He also doesn't want a trache. He chokes on his own saliva. He takes medication to dry up excessive saliva and it makes him constipated so he takes a stool softner. Now he is starting to lose his bowels. He thinks that there has to be a better place for life after death because this is HE..! I hate to say it but I'm glad that he no longer lives at home and I get to go back to just being his wife and not his full time nurse. We had to apply for medicaid in order to pay for the nursing home. We are still waiting to be approved. I guess that will probably be my next battle. So, if you find yourself so run down and just wanting it all to end, don't hesitate to use a nursing home. Or at least try respite care for 5 or 10 days. Medicare will pay for that. I know this sounds cruel, but I'm just one person and what it really takes for full time care is three or four people willing to take over every three days. If you are fortunate enough to have at least one person who can take shifts for you, try to remove yourself completely from your PAL when it's not your shift. I read somewhere that it's best to do three days on and three days off. I know this information may be overwhelming or unimaginable to some of you, but your not doing anyone good if you continue on a destructive path for your own health. I wish that I would have forced some of his family members to help take care of him. I keep thinking that they will step up and help me out in order to keep him at home. Oh I almost forgot to mention, we did solicite help through a local hospice agency. They have been wonderful and helpful. My husband starting receiving all of his medication, equipment, and home health aids to bathe him. They continued to help with services after Alan went to the nursing home. To some of you I may sound selfish, but I've got to such a breaking point that I'm ok with what ever others think about me. This disease takes such a toll on everyone who experiences it. I have got to a point that I really don't have anything positive to say and don't want to talk to people who think that they are being supportive, when all they do is sugar coat the whole experience. Sorry, but I'm still hurting and broken. Only time will heal what's wrong with me. I only look forward to this all being over and moving closer to my own loving family.

[jimercat]

sschult,

Don't feel bad! Family and friends always have great advice until it happens to them!:wink:

You've done the best you can and now you need time to recover so that you can spend the rest of the time with your husband in a loving way.

thank you so much for sharing your experience with us! We need to hear from all CALS about how they cope (or don't). This is very helpful info!

Please keep us posted about your journey with your PALS!

Good Luck!

[fiddleplayer51]

sschult,
You did the best thing you could have done by posting here and being honest. It takes guts to express such feelings as you did and it helps others who might be struggling with guilt and burnout when someone comes forward as you have and admits that they are glad that their PAL is no longer at home and that they wish it was all over.
I hear what you're saying about having problems speaking up because that was always me years ago. But by golly when you reach the breaking point, you learn to speak up! It's a shame it takes getting to that point.
I can't believe your PALS sisters and brothers don't help you out. Seems like people are pretty good at finding fault with the way situations are being handled until those same people find themselves in those shoes.
I'm glad hospice was so helpful. There's no way anyone would think you're being selfish.
One of these days this will all be the past and you'll have your life back together again. Hang in there. Be strong!
All the best,
Jane

[CindyM]

They say they don't like to see him like this.

Hi Sschult. First of all, you did a super-human job under very difficult circumstances. Anybody who feels the need to criticize you should try doing just half of all you have done for Alan.

Second of all, that statement of theirs says an awful lot about them. I hear the same from my sisters, who don't like seeing my Mom as she is. I get so angry I almost cannot find the number of things wrong with that kind of attitude. As if they should somehow be spared the pain of life, or they only want to see their relative under the best of conditions (what happened to unconditional love?)

Anyway, it does me no good to rant. I just want you to know that if there are any selfish people in your family, you, CERTAINLY, cannot be counted among them!
Cordially, Cindy

[beaner1]

Hi Sschult,
To heck with your husband's family! If they had any idea of what you've gone through, they'd zip their lips pretty damn quick! We all know exactly how you feel - there wasn't anything you've expressed that I haven't felt. My husband is very advanced, and the only help I ever receive is from my family - my dad is close but the rest are 600 miles away! We have a couple of great friends that come and help out sometimes too - but my husband's family - don't get me started! One of his step-brothers has MS, the other lives two blocks away - he hadn't seen his brother since the middle of May but graced us with his presence on Sunday. He doesn't help out though - when he found out that his brother had ALS, he tried to steal his golf cart - my son straightened that out very quick! I'm lucky in the fact that our combined insurance helps pay for nursing care 4 hrs. a day Mon-Fri and our regional health authority also funds us for an aide 4 hrs a day - every day. I don't know what my kids and I would do otherwise - I have to work!

I get the exhaustion though - I leave for work at 5:30 a.m. and don't usually get home till 5 p.m. - after that it's caring for my husband till I leave for work the next morning. My kids spell me as much as they can, but they work and go to school too. Sometimes I think I could sleep for a month! Does anyone else ever feel like you haven't the ability to make a decision? Sometimes the simplest things just stymie me! It's like my brain refuses to work - I'm usually very organized (some people call me anal :)), but lately - yikes!

Hang in there, everyone!
Beaner

[sschult]

CJ, Jane, Cindy, and Beaner,
Thanks for responding so quickly. I knew that I would have great support from this forum. I wish that I had joined this forum years ago. Perhaps I could have avoided some of the bad decisions or feelings of despair. You all have made me feel like I can get through this. I tried for years to always stay positive and I now realize that I was fooling myself. I need to get real!!! Again, Thank you all!
Regards,
Shari

[fiddleplayer51]

Any time, Shari, and vent any time! We all need to do it and hear it! That's one big way we help each other out.
Take care,
Jane

[fiddleplayer51]

swi,
I don't know anything about the botox, but I just want to wish you all the best with whatever you are working through. Sounds as if you've worked through quite a bit and six years is a long time to keep at it!
Thanks for the tip about the book "Good Grief".
Good luck tomorrow in Chicago. Let us know how it all works out. Sorry not to have replied to you sooner.
Peace and good wishes,
Jane

[swi71]

Thanks, Jane,
The visit to RIC went really well. The doctor had really prepared for our visit and explained what he thought were the best options for dealing with Gerald's contractures. Botox was actually his last option because he was afraid of what it might do to swallowing and/or breathing. We will go back July 15 to the OT department for more assessment. Right now we will just increase oral meds to see if that will help.
Yes, six years has been a long time--especially since the doctor at the University of Chicago put us in hospice over 2 years ago because he thought Gerald would aspirate and be gone within 6 months without a PEG (we've changed hospitals since then).
swi71 (actually, Sharon)

[fiddleplayer51]

Sharon,
When I wished you luck tomorrow for the Botox appt. I didn't realize the date of your first post about it.
It's nice your doctor was well-prepared. So you were only consulting the RIC doctor to find out options on how to deal with the contractures? I'm assuming the oral meds you're increasing are to help with the contractures. If you care to share, I'm just curious about what meds would help with contractures.
Your bulbar-onset story amazes me since my PALS is also bulbar-onset; and to think your PALS has gotten on without a PEG and has even gained weight is really something.
This disease is completely unpredictable! No wonder they haven't found causes and cures...
How does the FTD affect him now?
Lots of questions...:-?
Take care and thanks for sharing.
Jane

[cukita99]

swi71, i tried botox, pretty expensive n didnt do anything for me.

[swi71]

Jane--
Ask away. If I can help you or anyone, I'll be glad to share anything I've learned. First, the meds: He is on tizanidine for the contractures. He takes two four mg tablets twice a day. The dr increased the dose to include an afternoon dose. We'll try that for a week and if it doesn't make him too sleepy, we'll add another tablet at that time and see what that does.
When we go back 7/15, they will work on ways of getting him straightened out. How he got this bad (this doctor said he'd seen much worse) is a long story.
Now the PEG. This is bound to be tough on some on the site and I don't want to hurt anyone, but here's what we've done: When he could still indicate, he said NO to the PEG. It's been tough, but we've honored that. Here's his diet: Morning: cream of wheat made with rice milk, honey to pudding consistency, prune juice and lemonade (all liquids are thickened to pudding consistency with Thickit 2--we go through the big can every 9-10 days--I buy direct), and a small container of yogurt if he is still awake. Lunch is pureed meat mixed with a baked potato (usually leftovers), pureed vegetables, cranberry/pomegranate juice and lemonade and sometimes lemon pudding (it has no dairy). Snack is 12 oz of thickened goat's whey protein powder (you dissolve it in water first). Dinner is much the same as lunch, except we give him vegetable juice instead of cranberry. We have had to eliminate most all cow milk products bec. they cause excess saliva for him and pasta is too sticky now. He sometimes has to be suctioned, but the caregiver (and my kids and I on Sunday) have a rhythm and he is able to get the food down fairly well. As you can probably tell, he is eating many calories here--the Thickit alone adds 3500+ calories a week.
Now the toughest part--the FTD. We have no way of communicating with him and do not know what he understands because of this. We did try to get a device at RIC when he could still communicate some, but that never worked out. He will still look at us and sometimes makes a sound when we talk to him, but basically we just try to anticipate his needs and do our best. We think he still knows what is going on--he seems to follow the TV shows he watches--but we aren't sure what cognitive changes have taken place. I can tell lots more about what we've learned along the way, but this is too long now.
Thanks.
Sharon

[fiddleplayer51]

Sharon,
Thanks for your willingness to answer questions. I guess they told you to be careful with the tizanidine because it can cause hypotension. Be especially careful getting your PALS up from a supine position because he can suffer orthostatic hypotension.
Your food regimen is amazing! I'm impressed! Thank goodness you have so much help, especially since you've been doing this for six years now.
The FTD must be really hard to deal with. I can't believe that some CALS not only have to deal with ALS, but also FTD. That's mind-boggling!
Thanks again for all you shared. I hope you post whenever you feel like it. We can all learn from each other and get through our days easier by interacting here in the forums.
Peace,
Jane

[CindyM]

Not to get too far off topic but I just want to interject a quick comment to both Sharon and Jane.

To Sharon and all who bare their souls here; thank you so much for sharing. To Jane and all who respond with compassion and dignity; thanks for making this forum so special and helpful.

Cindy

[swi71]

Thanks Cindy, Jane and cukita99.
Now--Jane a question: no they haven't told me about hypotension; what is this? We change his position every 2-4 hours (from wheelchair to bed and back) using a hoyer. Please tell me more.
I hope we can be helpful to each other. We have not had good luck with support in the area. We are too far from Chicago (70 miles) to go to support groups there. Frankly, I'm too tired when I'm working (I'm a high school math teacher) to go anywhere. My older son, daughter-in-law, granddaughter, the caregiver, and my younger son (home from college) all live here, along with 3 dogs. I am very thankful for the company and help, but sometimes it does get overwhelming. I dread the day they are all gone, but do wish for some form of normalcy at times.
FTD I think has been hardest of all to deal with because we lost him long before ALS took his body. Even though the counselor and I tried to get through to him, he never realized how little time he had mentally.
Thanks,
Sharon

[fiddleplayer51]

Sharon,
Hypotension is low blood pressure. Orthostatic hypotension is low blood pressure brought on by arising from a recumbent position. Here's a more complete definition from the RxList site:

"Orthostatic hypotension: A temporary lowering of blood pressure (hypotension) due usually to suddenly standing up (orthostatic). Orthostatic hypotension may be experienced by healthy people -- it is more common in older people -- who rise quickly from a chair, especially after a meal, and have a few seconds of disorientation.

The change in position causes a temporary reduction in blood flow and therefore a shortage of oxygen to the brain. This leads to lightheadedness and, sometimes, a "black out" episode, a loss of consciousness.

Symptoms include dizziness, feeling about to black out, and tunnel vision (all due to insufficient bloodflow to the brain). The symptoms are typically worse when standing and improve with lying down."

Here's a precaution from the same RxList site about tizanidine:

"Tizanidine is an α2-adrenergic agonist (like clonidine) and can produce hypotension. In a single dose study where blood pressure was monitored closely after dosing, two-thirds of patients treated with 8 mg of tizanidine had a 20% reduction in either the diastolic or systolic B P. The reduction was seen within 1 hour after dosing, peaked 2 to 3 hours after dosing and was associated, at times, with bradycardia, orthostatic hypotension, lightheadedness/dizziness and rarely syncope. The hypotensive effect is dose related and has been measured following single doses of ≥ 2 mg.

The chance of significant hypotension may possibly be minimized by titration of the dose and by focusing attention on signs and symptoms of hypotension prior to dose advancement. In addition, patients moving from a supine to fixed upright position may be at increased risk for hypotension and orthostatic effects."

Just use caution. Tizanidine doesn't necessarily cause hypotension or orthostatic hypotension, but it can. The precaution quoted above is just suggesting that if the patient is experiencing hypotension or orthostatic hypotension after taking this drug, a gradual increasing of the dose to the desired dose may minimize the degree of hypotension experienced.
If you have further questions about it, you should consult the Dr. who prescribed it. Hopefully everything will go fine and you won't have to worry about it.
All the best as you care for your PALS,
Jane

[fiddleplayer51]

Thanks for the comment, Cindy. There's alot of teamwork going on here.
Take care,
Jane

[swi71]

Jane--
Thanks. He's been on it for a long time now--over 2 years. No, the drs never warned us about side effects, but I've tried to read the information the pharmacies all give with each drug. I'm guessing that they weren't too concerned about hypotension in his case because he isn't mobile. However, this new dr did warn us to watch for excessive sleepiness as we increase the dose. I worry sometimes bec we'd never know if Gerald were having certain side effects (some of his meds have such things as dizziness, hallucinations, nausea, headaches, etc.as side effects). I hate to see him put on any more meds bec of this. His local dr took him off of Rilutek bec his liver enzymes went up, but he hasn't had blood work since then (about 2 years ago).
Hey, enough about me. What can I know about you?
Prayers and peace and thanks,
Sharon

[fiddleplayer51]

You're sure right about side effects. So much of the time how could you possibly know if your PALS is having side effects?
Not much to say about myself. I'm just one of the CALS living day by day with my PALS.
Blessings to you and your PALS and thanks for posting on the forums.
Peace,
Jane

[swi71]

Jane and Cindy and all,
Thanks for this week. I've been encouraged by what I've found on the forum, and will be back, but I'm headed to Atlanta with a group of teens I coach this next week (I may have internet access, but I don't know). A good friend of mine lost her 15-year battle with cancer this week. Her funeral was today. So having encouragement in the ALS fight was a big help.
Sharon

[fiddleplayer51]

Sharon,
I'm so sorry about your friend. What a battle she fought! It's nice the funeral could take place before you have to leave for Atlanta.
Have a safe trip and enjoy those teens! They're sure to lift your spirits!
Blessings to you, Sharon, and I look forward to hearing more from you on the forums whenever you can access them.
Peace,
Jane

[CindyM]

Yes, enjoy your trip, Sharon. I am sorry to hear about your friend.

[swi71]

Hi Jane, Cindy and all:)
I'm back from Atlanta. We had a good week and even got to see some awesome fireworks in Atlanta on the 4th.
Thank you for the condolences. My friend was a fighter--determined to raise her kids. Her daughter graduated high school in May. My friend cried so at my daughter's wedding in 2006. She said it was because the wedding was so beautiful, but somehow, as positive as she was, I think she knew that she might not see her own daughter marry.
I need some advice on another question--Gerald is really starting to twist to one side when he is in his wheelchair. His torso muscles seem to be contracting or perhaps spasming. We try to vary his positioning as much as possible, but does there come a time when he should spend more time in a prone position? Will this help contractures and/or spasms?
We do go back to Chicago 7/15 to orthotics and OT.
Thanks.
Sharon

[fiddleplayer51]

Welcome back, Sharon. Did those teens wear you out? Nice you got to see some good fireworks. The only fireworks we saw here was lightening!
I'm going to let someone else advise you about Gerald's twisting torso. I've yet to have to deal with that. :-( Hope you get some good answers.
All good wishes to you, Sharon. Glad you're back.
Jane

[MtPockets]

I really have enjoyed following your conversations on this thread.
I always am amazed at the kindness of complete strangers on the forum.
Just wanted to let you know you are a blessing tome, as always.

[fiddleplayer51]

Thanks Mt. This has been a good thread. Everyone pitches in and makes it that way.
You're a blessing, too, Capt. Al.
Have a lovely and peaceful day.
All the best,
Jane

[CindyM]

My torso contracts too, when it is not shaking like I am shivering from cold. Quinine helps the contortions. My docs prescribe it in the form of Qualaquin and I take four 324mg capsules a day. Unitl they prescribed it, I almost had to give up driving.

[swi71]

Thanks Cindy--
I will see if this is a possibility for Gerald when we go to RIC again next week. Since he can't tell us, I don't know what it feels like for him.
Sharon

[swi71]

Hi Jane:)
The teens kept me busy--I do get worn out, but it's OK. They keep me young.
It's good to be back. Hope you have a good day.
Sharon

[duplinwino]

What a wonderful thread this has turned out to be!

I just wanted to share some recent news. I was approved for FMLA and will go out next week. My boss has given me permission to do "occasional" work at home which will hopefully turn into long term work at home status, and has given me access to a laptop! My main goal for going out was to spend the rest of the summer doing things we want while it is still manageable and Brian can enjoy them. So the "occasional" work is set up so I won't use all of my time up while out. Brian confirmed my decision to do this last week when he fell while I wasn't home and couldn't get up. He had to lay in the garage for 30 minutes before I could get there and help him. It's just not safe for him to be home alone anymore, plus his progression is steady here lately and I really think we can get some quality time in this summer. Anyway, enough rambling.

Thanks everyone for sharing your experiences so freely and openly.

[sschult]

Hi everyone,
I remember when Alan started falling and we got an alert system through the red cross. It's a system that uses the phone line and the patient pushes a button or switch to call for help. The buttons and switches come in a variety of forms and can be used by most people. It does cost about 30 dollars a month, but worth every penny when you must leave your pal home alone. Alan is doing fine at the nursing home. He is receiving better care than when he was at home.
Take care,
Shari

[Al]

Hi Jane, Cindy and all:)
I'm back from Atlanta. We had a good week and even got to see some awesome fireworks in Atlanta on the 4th.
Thank you for the condolences. My friend was a fighter--determined to raise her kids. Her daughter graduated high school in May. My friend cried so at my daughter's wedding in 2006. She said it was because the wedding was so beautiful, but somehow, as positive as she was, I think she knew that she might not see her own daughter marry.
I need some advice on another question--Gerald is really starting to twist to one side when he is in his wheelchair. His torso muscles seem to be contracting or perhaps spasming. We try to vary his positioning as much as possible, but does there come a time when he should spend more time in a prone position? Will this help contractures and/or spasms?
We do go back to Chicago 7/15 to orthotics and OT.
Thanks.
Sharon
Is Gerald getting any range of motion exercises or any other physio? It may help with the twisting.
AL.

[swi71]

Al--
No, he isn't. This is a long story, so let me see if I can boil it down. One of my friends showed one of the caregivers how to do the exercises and we also had a PT come in (insurance only allowed a few visits of the PT--he was phenomenal, but I couldn't afford then to pay out of pocket). Anyway, the PT trained two of our caregivers, but we went through 5 in 6 months and the present one has not resumed them, even though he was one of the ones who was originally trained. The OT at Northwestern did not encourage the caregiver to resume them (Gerald is very contracted and she was afraid of pain). When we go to RIC, I can see what they say. However, I'm not sure the caregiver will do them without more instruction and/or being told he must.
I am not strong enough to do some of the exercises and, honestly, I have had to take a real "hands off" approach in Gerald's care. I was blamed by some of the caregivers we lost as being too demanding. I've been told to just "let them do their job." I bite my tongue sometimes when I know I probably shouldn't. I can't afford to lose another caregiver at this point in Gerald's illness. The caregiver does a good job keeping him bathed, fed, and positioned, but his English is sometimes weak. I don't even know how I would approach him to put the exercises back into Gerald's care.
Thanks.
Sharon

[swi71]

Hi:)
Glad you got OK'd to work at home so you can spend time with Brian. One of the best things our kids ever did was to push us into taking the Hawaii trip we had never gotten to take the year after Gerald was diagnosed. (They even had a party for my 50th birthday and our 30th anniversary and asked gently for people to donate for the trip, if they would). Cherish your summer.
Sharon

[fiddleplayer51]

Ashley,
This is such good news! I have to say, I admire your ability to take the bull by the horns, figure out what needs to be done, and then do it! You've done it with FMLA and you also did it with ssdi and Medicare. You were so smart to contact those Senators, and you have helped others by posting what steps you took to get your ssdi/Medicare.
Your PALS is so fortunate to have a wife like you and you are a wonderful example for your daughter. One of the most important things we can teach our children is to be pro-active in problem solving.
All the best to you and your family as you go through this illness together.
Jane

[fiddleplayer51]

Thanks for the tip, Shari. There's nothing like peace of mind when we have to be away from our PALS for any period of time.
I'm glad Alan is doing well at the nursing home, and I'm glad that you feel as if he is getting good care. I'm thankful for you that you are on your own now after all you've been through. I really admire your courage in telling us of all the difficulty you experienced and being so open and honest about your true feelings during the pre-nursing home days. Honesty like that helps others who are struggling--it helps them know they're not alone, and it helps them not to feel so guilty when they have feelings such as you described.
Take care and all good wishes,
Jane