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happygardener

Active member
Joined
Aug 27, 2011
Messages
91
Reason
Loved one DX
Diagnosis
08/2011
Country
CA
State
Nova scotia
City
Porters lake
My husband was diagonsed in aug after almost a year of symptoms.His condition is deeroriating but he is in denial..Determined that dr.s are wrong and he is going to get better.I am caring for him and doing whatever I can to make him comfortable.We have been to the als clinic and he says we are not going back.i am so fearfull that something drastic will happen and we will not be able to recieve help.Moslty I am concered about swallowing issues and getting a feeding tube(he can barely speak,his mobility is poor,muscles badly atrophied and he is extremly weak.We to range of mobility exersies daily but he refuses all medication.What are signs he is progress ing to the next stage.How can I tell if he has breathing issues.I ask if he has headaches and i can hear a difference in his breathing.I am being supportive in all his efforts but it is breaking my heart.I have read so much my head is spinning and all I get from dr.s is that ever case is unique.Can you get through all of this without all the machines and gadgets ?What do you do when your loved ones resists treatment?Thank everyone,:cry:
 
Tell your husband that YOU need some support and advice in dealing with his deteriorating condition. It may be possible that he also has some FTD along with the ALS. Do you have family members close by that can help intervene with him on your behalf? I can not imagine having my family deal with my decline without the support of a good Neuro and Clinic.
 
You need to get the ALS Clinic direct care through Home Care. Between them all, they can determine what your husband needs/wants. Does he have a personal directive in place with his wishes? If not, that's step one! Take care.
 
My husband was the same way. He thought for sure it "was something else". I played along. We went through all the sites and symptoms, the whole shabang. They only thing you can do at that stage is prepare for what is to come. You can do it with out the meds, my husband didnt take anything untill the last few months, and that was only sleeping aids and pain meds. Pain meds were a god send. You need at least a lift and a powerchair. I did it all by myself for many months and it took a toll on my body. I lifted him up and adjusted him untill i told him "if i hurt myself, there is no one to take up my slack, and then where will we be?" Hr got it then, when his only help may be helpless. the powerchair let him stay a part of the world longer. Thats important. I saw a change in him when he wasnt our room being a bump in the bed. Enlist help! Family, friends.. anyone. I did it alone and it took its toll. You do get burn out, fast. I not being cold, im giving you the facts in our case. The feeding tube was something he did not want at all, until the doctor told him you dont get he feeding tube and your gonna die, that hit home. After we got that things got better, he felt better. I felt better. After he could no longer make the choices for his own good, i had to step in. then thats when stuff got done, but it was little to late. Put your foot down and do the things that need to be done. Its better in the long run. I lost my husband in November and I miss him everyday and i kick myself for not being the heavy, if i had, maybe I would have had more time. But thats only looking back. Sometimes tough love is teh way to go. I would give anything to have one more fight about meds, or anything for that matter. Just keep your head up and do what has to be done. It is as much for him as it is for you. He needs the help, and you HAVE to have the help.
 
Thanks for the response.When this all began I wanted to be open and honest and plan.Let our time together be doing what he wants.But I have seen the tearful panic times after many dr,appt.that I just decided togo along with his wishes.I am in contact with our local als society and I have friends waiting in the wings.Of course,above all i want to give him his dignity and lots of lose.he has always been the head of the household.I will have to take over when i see him in danger,but for now i just want him happy.i really cant get anything in place as far as equiptment until the team prescribes it,so far we have nothing but I know its coming soon.I just have to make him agree to go in for our next appt.
 
The ALS Society manager used to come to our home to talk to us and to evaluate Bob's progress and always, before we needed the equipment, she made sure it was in place and thankfully, not a day too early. It's a great way to be assessed without a medical person or team. Just a nice "social" visit for all concerned!
 
We had home visits from ALSA also. And I agree... denial could be normal denial or it could indicate some cognitive involvment. If you think you're seeing personality changes it's important you get a cognitive work up. I encouraged Glen to get a "second opinion" after diagnosis .. which should be done anyway. His neurologist knew of the personality issues and cognitive evaluation was done as part of the second opinion appointment.
 
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