husbands next visit

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wanda brittle

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Hello,

My name is Wanda and my husband Glen's Next appointment is jan 8th. He was diagnosed with ALS on October 2 2008. We as a family have been very supportive with his decsissions and requests to let him live the best of the remainder of his time.

But just recently I have run into a problem with the decission making process. My husband his appointments and I want to go to be there for him and support him the best I can. My husband on the other hand thinks that it would not be a good idea to go to this meeting with him. It will be the first appointment to show how the ALS has progressed.

Anyone have any ideas on what i should do. He seems to think it would be to hard on me and make me very upset to go to this appointment with him.

please write back any stories you might have or any suggestions.

thank you

-Wanda Brittle
 

CindyM

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This is a tough one. You want to support his way of coping but at the same time his disease affects the entire family. I wonder what other PALS and CALS will have to say on this subject? People?
 

Al

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I would be very upset with my wife if she did not come with me. First a second set of ears is good to have because you will miss some of what the doc says and the other person may pick up on it. Try to explain to Glen that as upsetting as it may be for you it would be more upsetting for you to just get the information second hand. You are going to be living and caring for him during some very trying times in the future. I know that this appointment while it may be upsetting, is nothing compared to what is to come. Hope I'm not scaring you but I tend to be direct and not sugar coat my answers. Take care. By the way, welcome but sorry about Glen

AL.
 

jennyhoff

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Hi Wanda,
I think men are different in many ways of dealing. When I was having my first few appointments, my family felt someone should be with me, so everytime I had someone go with me. I was so glad I did, because as you sit there, receiving diagnosed possibilities, or syptom management suggestions, or just info in general, your mind takes off. You are thinking about your family, your future, your past, your job, ---at least I did. He lost me at ALS. Good to have 2 sets of ears. Someone else is good at asking the questions that are hard to ask too. I used to just get too emotional. So for that reason alone I think it is always a good thing to have someone with you. And if you get emotional that's alright too!
Jenny
 

brooksea

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As a cALS, I can tell you that you MUST go! There is too much information to be absorbed by one person and as suggested the mind will wander about all the "what ifs."

I made the mistake of not going to my husband's last visit, which was a drug trial exam, and missed out on a very serious problem that could be a turning point for my husband. Of course he "forgot" to mention this to me, but the head research nurse called me today to check on my husband, as she is very concerned. I then learned he had a Friday appointment (this Friday) that he also forgot to inform me about. She then said we will have a "come to Jesus meeting" at that time!

There are too many things that can go wrong with ALS. Yes, at first things may go slow and you gain a false sense of security and then WHAM! you're hit with the first major decision you will have to face to keep your pALS alive!

Not trying to scare you, just giving you my experience.
 

georgia

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As a CAL I would say go too. You are in this together good, bad and the ugly. If it is upsetting you might have to find ways to express it maybe to some one else but you need to know.
 

hopingforthebest

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ALS Clinic visits

Dear Wanda

It will be 1 year of going to clinic in February and it has gotten better. First 3 visits were brutal for us. We would cry through the entire visit. At home we were strong (trying to be for each other and for adults kids) But the support team through the ALS clinic is the best. You will, by human nature, have your favorite people that are part of the team. Some will make you laugh and others seem to push the buttons and ask the questions that need you to answer or to go home and come back with the answers.

This is not easy and we are going through this together. We have to try and get strength and be the shoulder for them to cry or just to hold their hand.

Wish some darn much for a cure or some help to stop this stinking disease.

Keep checking in, you can get alot of support here and get some questions answered that you cannot seem to have the verbage at the clinic visits.

Patty
 

GlenBrittle

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A response to my darling wife

Wanda,

It is in my nature, even though I have this effin disease, to try to shelter you from the painful parts. Sorry , but I love ya !

The posts above do bring out good points.

I will let you make the decisions on whether to want to come or not.

No secrets :!: .

Glen
 

CindyM

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Good luck Wanda and Glen! We are with you every step of the way! Cindy
 

Micheline

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Glen, I know it's hard to "let" someone in, especially family.

In the year of doctor's appointments, Steve has only missed one of them. My very first one. I don't know how I would be able to cope after them without him as it progressed I became more (too much) emotional. I have limb onset, so getting around right now by myelf is next to impossilbe for me. But we both can go over all the information that was said on our way home.

There is alot of information to absorb at these appiontments, I was overwhelmed but getting the knowledge of this disease and what is yet to come is hard to take by yourself. Wanda also may have questions for the doctor, that you cannot answer or you forget to ask. There's strenght in numbers! Just my 2 cents.

Micheline :)
 
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Al

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Way to go Glen. I think Wanda wants to come. Also glad to see another husband and wife "team" here. Not a lot of pairs seem to register. Don't know why though, it can be helpful for both.

AL.
 

SteveS

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Yes, I agree here. It is very important that you go to your husbands appointment with him. As Micheline says I have only ever missed one appointment. She may have the disease personally but we as a couple and family have it along with her. The more I get to know about the disease and her progression the better it is for her in the long run. The only way to get the accurate information I need is to speak to the doctor directly myself. I am a very active participant in her doctor visits since she is a bit more emotional than I am and sometimes have to ask the questions she cannot.
 
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sisgldnhr

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clinic appointments

Happy New Year!

Don was diagnosed in March 08. He was feeling bad for approximately 1 1/2 yrs prior to diagnosed. He could never get to the appointment without me going along because his head drop is so bad that he could drive 2 hours.
I would never not go to his clinic appointments! I feel that as a CALS it is vital that I am there to get as much information as I can. So that I can be a better caregiver.
In the past we would always stop for a nice lunch together halfway home but I don't see that happening anymore because Don won't eat in public anymore.
We go to clinic on January 6th. Don has been feeling very poorly. I saw him stumble yesterday, scared the heck out of me. I asked him if this has happened before and he told me a couple times. I've got to come up with something for the stairs. If we don't get a lift he will have to decide what floor he'd like to stay on.

Don's hospice nurse comes every Monday. Last week he told Don that if he didn't want to go to clinic anymore that he would have the hospice pulmunary person make house visits. I was surprised to hear him say that. I'm not liking the idea of him not going to clinic. Don is still mobile (wobbly) but I think that the two hour drive would not harm him.
Him telling us that.......scares me.

Happy New Year,

Sis
 

CindyM

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It does sound scary, doesn't it Sis? But try not to read too much into this. Maybe they were just thinking of the long ride. Hospice folks are all about comfort, in my experience. Regards, Cindy
 

sisgldnhr

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clinic visit

Thanks Cindy for the advise! I need to keep in the here and now!

Don's clinic visit was great. His breathing was the best yet! He's at 70% up from 67%. Dr. Nash thinks that Don's stumbling is from the truck area as his legs are still very strong. Dr. Nash was surprised by how strong his legs still are. Now his upper body is a different story. He has less strength at each visit. His hands have really undergone some changes. He can still button a shirt but it takes him about a half hour to do it. So I help when he'll let me :)

We also stopped and ate a bowl of soup on the way home, I was so glad that he felt up to it.

Sis
 
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