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robinswife

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CALS
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Surrey
Hi all
I just need to vent a little. I'm new to this and hope I dont ramble to much.Robin is making me a little nervous and from read other post I think I need to worry a little He coughs and chokes on just about everything that he eats or drinks. He refuses to admit that its about his als that its everything else.Should I get him to see the dr.He has been diagnosed with sleep apena as well and refuses to have a machine at night every morning i'm so afraid he wont be breathing .Robin was diagnosed 03 09 2006 and has lost all use of his arms, hands and legs in the last year.
 

swmn

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marshfield
So sorry

Hi Robinswife,
I am so sorry to hear that your husband is struggling with ALS. It has to be so hard for you to watch him deteriorate - It's too bad that he hasn't taken advantage of a bipap b/c if he is not getting enough air, the ALS as well as any health issue further progresses. I hope you can convince him to try the bipap as he would feel so much better, just having a good night's sleep.
Have you adapted his diet to be more soft foods/ thicker drinks? I 'll keep you both in my prayers. Best of luck convincing him to accept the bipap - that would be a great improvement.
 

Rick Meijer

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CALS
Diagnosis
09/2005
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SA
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Western Province
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Cape Town
Robins wife

Hi there Robins wife, and good morning from Cape Town South Africa.. Care giver here for a friend who was diagnosed sept 05, he still has some use of arms, legs and whats more important, his fingers.. Loves his computer, and has a blog online, unfortunately in Dutch, since thats where he is from.. Climate in Cape Town (its summer here) does him the world of good, breathing in Amsterdam was getting more and more difficult for him, and talking without a cough after every word next to impossible.. After two weeks enjoying the salty sea air, and our humidity, the coughing went, and the sleeping has drastically improved. Not needing a machine (yet) but convince your husband that, in order in order to have a good nights sleep, he should do someting about the air quality of his environment. I noted that, after a goood sleep, my friend feels lots better during the day, and enjoys being alive imensely.

As for food, some tips from an amateur.. Scrambled eggs in the morning, without the toast. 4 eggs, the yoke from one egg, the whites from the remaining eggs, (keep the cholesterol intake in check) and he gets his proteines, no chocking, no chewing, and with different herbs every day on them (experiment, let your fantasie go wild) its always diffferent. Dress up the plate with parsley, a flower, a leaf or whatever to make it look different every day. NOt much work, and so much nicer, breakfast becomes a party in this way. Lunch is various fresh fruits, peeled and cut, and hop, all in the blender, also here you can experiment to your hearts desire, you will be amazed how many different tastes you can create using different fruits (adding ginger, carrots and what have you, give the fruit coctails an extra twist) and he just loves it.

Evening meals, you can prepare almost everything, using the blender again.. Potatoes I mash, and spinach i grind to a pulp, as i do broccoli, coliflower, carrots, beetroot and so on. Meat is mostly stew, nice and soft, and again with using different herbs and ingredients, it never has to taste the same.. Note that you just dont want to splash it on his (and your) plate, but make it nice and presentable, so in this way dinner becomes a party. Decorate the dinner plate again with whatever you can come up with.

We decided overhere that we are not going to prolong his life at any cost, he takes his dayly riluzol, and that's it. Better a great quality of the time he still has left, than being depressed, taking loads of pills and doing doctors visits and let ALS dictate his life. He has ALS, we accepted it, but ALS is NOT him ;-) In the two months that he has been here we had soo much fun, and cried only twice.. can you believe.. Loves his outings, going to the boulevard with the electric wheelchair (gives him independance) and walking the dog, trips in the car, it all takes loads of energy, and the next day he is usually very tired, and takes several naps. Its worth the sacrifice, having 1 fabuous day and a bit of an off day the next.. Quality of life is what its all about right now, cause lets face it, his days are numbered, we know and accept that.

And, you're not a care giver, you are a love giver, is what he told me recently, this way he can accept the help and dependance on me for almost everything easier..

So, dont be afraid, give it what you've got, try to be positive and dont let it wear you down..

lotsa love, you're a fab woman taking care of your man, here's a pat on your shoulder you hear !

Rick
 

CindyM

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Hi Robin's wife. Your post made me think about all the reasons why a PAL might not want to use a Pipap. We've covered them before- like not wanting to admit that things are at that point or not liking the feeling of a mask over the face. But sleep apnea provides a door to solving this problem, because lots of people have sleep apnea, and so it might not be hard to find someone in your circle who uses a CPAP. You can also find lots of reasons on the internet for treating this not-so-uncommon condition. Those reasons might motivate him.

You might also do a search on these boards for swallowing and food issues. Lots of good advice. I don't think it is time to worry too much yet. His ALS is getting worse, certainly, but it sounds like you are at a place where things can still be solved. Cordially, Cindy
 

AHands

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Robin is making me a little nervous...refuses to have a machine at night every morning i'm so afraid he wont be breathing

I don't know muc about all this, but it seems there are different kinds of machines--some less invasive than others. Perhaps he'd be more ammenable to a simple machine or device?

If not a machine maybe some special pillows or braces would help?

Perhaps being presented with an audio or video recording of his sleep trouble would be convincing?

Perhaps presenting it as something he can do to relieve YOUR anxiety, rather than something he needs for himself, would motivate him?

Just some thoughts...
 

caroliney

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Sounds Familiar

Hi Robins Wife,

All this sounds so familiar to me. Husband had same symptoms. Puddings are very easy for ALS patients to digest, if he likes puddings. Thick=It is available to place in his liguids, etc, and Scandi Shake can be purchased in different flavors for him from Walmart or Costco. You do order the Scandi-Shakes in a box of 4 packets and it taste great like a milk shake, but has the consistency for drinking without choking. I purchased creamy ready made puddings, as time was of the essence for us. Experiment if you have the time with thicker consistency foods and drinks.

A Bi-Pap machine is the best thing for the breathing issues if he is not doing well in that area. Seek the Pulmonary Doctor for adivice and he will lead the way for your husband.

Stay strong, and remember you are not alone in this. You have came to a forum of frends and we are with you every step of the way.

Hugs and Prayers,
Caroliney:)
 

Lorie

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Swallowing

Swallowing. The specialist at the hospital that did Tim's test a few weeks ago. Said that what will happen if they are not able to swallow well, food will seap into the Lungs, which can cause Pnemonia and can also make them choke.

An ALS friend told me about a technique-Chin/Tuck. When about to swallow, tuck chin down and then swallow coming up tilting head upward to make the food go down. Its easier to go down.


Out of dairy products, we only give Tim cheese. Anything with milk makes his congestion worse in his chest.


Lorie
 

Lorie

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Thick It

Thick It! Check with your local Pharmacy to see if they can order it. It thickens liquidy foods so they will go down easier.
Lorie
 

trustinggod

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Hi Robin's wife,

Reading your post reminded me of some things I had forgotten since my PALS passed.

Linda refused to use the bipap too. We had the tech come and fit it on her and offer her several choices of masks to use. She'd smile politely, say "thank you" but never would agree to using it for more than a try here or there. Finally one day she told me the real reason for this.

Because Linda was a respiratory therapist before she got sick she understood exactly what was going to happen as she lost the ability to expand her lungs and breath on her own. She made the decision to not use any breathing apparatus because she did not want to become dependant on them. She choose early on to let the disease take it's course and live the best life she could in the meantime. Her feelings about the bipap were that if she used it at all she'd find out how much better she felt with it and then need to wear it all the time. She felt that it hampered her ability to enjoy the interaction with family and friends and was very uncomfortable.

It was hard at first for her family to accept her choice in the matter but they did understand her reasons behind it. She lived a pretty "normal" life right up to the end
and (with the help of comfort meds at the end) died a peaceful death.

I am sorry that you are going through this and I hope that your husband finds what is best for him. I will keep both of you in my prayers.

God Bless,
Jeanne
 

robinswife

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hi all

Just wanted to say thank you to everyone for the support and comments I really glad I'm able to just vent here and great people like you are there to help me
God bless you all and your families and the pals in your life
Judy
 

CindyM

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Vent anytime, Judy. that's what we are here for! Cindy
 

ScottishKiwi

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Hi Jeanne and all,
My husband is not keen on using any breathing mask over his face because he feels claustraphobic and because he doesn't have the use of his hands, he wouldn't be able to move it by himself - especially overnight when I am in another room sleeping. He has accepted that it may cut his time on this earth down a bit by not having a breathing machine, but is quite adament he doesn't want any kind of mask.
I am now curious at what stage my husband is at - or how long he has left. He can't use hands, arms or legs, completely bedridden and is being fed pharmacy only liquid food pumped in by his PEG tube. He chokes on his own saliver and he has to take medication to dry up his mouth (our doc prescribed an eye drop for this and is works really well most of the time). His breathing is quite shallow and his speech is very slurred and faint. I realise that everyone is different, but wondered if there was an average timeframe from his stage in life? Can anyone help?
Many thanks,
Ang
 

CindyM

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Hi Ange- if you were in the US or Canada I'd say it is time to contact Hospice. I think they are international but may work differently from country to country. If they will make home visits, they can help with personal care as well as assess what "stage" your hubby is in. If you do not have access to Hospice services, perhaps your ALS or MD chapter can advise how to prepare and what to expect. Just a thought...Cindy
 

trustinggod

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Hi Ange,

From your discription of your husbands condition it sounds to me like the end is very near. All of what you mentioned is exactly how it was with Linda the final days of her life. We used the exact meds you mentioned and were very successful in keeping her comfortable until the end. She was able to enjoy the company of family and close friends who came by to visit and say good-bye those last three days because the meds helped her not to need the suctioning every 15 minutes anymore. We were advised by the hospice nurses to stop all nutrition and only give liquids or water if she requested them. This seemed to really help with her comfort level. They say the body begins to shut down several days before dying and if nutrition is given it causes alot of discomfort.
Those last three days Linda seemed the most comfortable I had seen for over a month.
It was only the last two hours before she passed that she began to experience severe respitory distress. At the first sign of this we upped the Ativan and morphine, she became more comfortable and slowly, peacefully slipped away as her loved ones gathered around her bed rubbing her feet, singing her favorite praise songs and telling her the fight was over and she could let go. My youngest daughter (19) was in the room (Linda's daughters best friend) and I was a bit concerned that she might be afraid
to stay but later she told me the experience made her feel much better about the dying process.

The meds were a huge part of helping Linda die peacefully and without physical suffering (as far as I could tell). However, I feel that the ability to accept that she was going to die and have peace about it was only possible because of her faith in Jesus Christ and her unwavering belief that she was entering into eternity with Him.

I hope this information is helpful. My heart and my prayers will be with you.

Warmly, Jeanne
 

Icanmanz

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Tomball
Jeanne, what a wonderful post. Thank you so much for preparing some of these Cals, that have loved ones that are not gone yet. You are such an inspiration, He helped you put it together so well. I am sure you have read my posts. My son passed at home, too. It was quite an experience. I think of him every single second of every single day. I still miss him so much. I moved into the room where he passed, and have been sleeping there ever since. I feel so warm when I sleep there. I can see my tropical plant, and flower garden from my son's window, and he used to love that garden. Sometimes I just lift my blinds, and just stare at the garden, and think of him. He is still in my heart. He will not be forgotten. God bless you all!

Irma
 
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