PALS in denial

[pittsburghgal]

My PALS was able to eat and drink without difficulty prior to last June when he was hospitalized for bilateral subdural hematomas from multiple falls.( He had a walker but refused to use it.) He had a very stormy hospital course and was hospitalized for 10 weeks and required intubation with subsequent tracheostomy. He had a modified barium swallow and was allowed to eat solids in small pieces and nectar thickened liquids. While on this diet for less than I week, he aspirated and had his third episode of aspiration pneumonia while hospitalized. He was then NPO ( nothing by mouth) until a second modified barium swallow was done just prior to discharge. The results showed he was a high aspiration risk and was advised to remain NPO. He worked with a speech therapist at home for 12 weeks and then had a repeat barium swallow, which he again did very poorly. He was advised by the speech therapist and by his ALS neurologist specialist not to repeat the test any further because there really was no expectations that the results would be any better. He has a PEG and takes nothing by mouth except for a couple of bites of pudding or yogurt each day. He is obsessed with food and asks my daughter what she had for dinner each night. When anyone eats out, he wants to know what they ate in detail. He watches cooking shows on TV. We saw his pulmonologist last week and my husband asked him for an order for another modified barium swallow, which the physician gave him without any discussion basically to just be done with the visit. I was really upset. Even the neurologist said to him "why do you keep putting yourself through this?" I told him that I would not take him for the test so now he is trying to bully my daughter into doing so. Any thoughts?
Sharon

 

[Nikki J]

I am sorry. I can understand a lot of what he is feeling but agree he is unrealistic. It is very hard to lose the ability to eat. Even if you are not especially food oriented there is a social and psychological part that is hard to give up. Coupled with the sudden loss after the trauma it is doubly hard. In his mind I am sure he is rationalizing this is from the accident not the ALS. The complexities of the trauma, intubation precipating losses that were coming must be hard to accept.

This does not help your problem of course. I think I personally would take him one last time but I completely understand your position. To everyone except him it is completely pointless

 

[cheerleader]

Oh Sharon,that is so sad. My hubby could only have thickened liquids for the last year of his life- and every cooking smell was savored by him. He, too, would reminisce about places he'd been to eat, etc. Eating is such an important part of our lives- including social interaction. You can understand why he is obsessing. You are fortunate he got the PEG! Mine had one put in on the last day of his life, after he had aspirated and got pneumonia. Think he would have lived longer had it been done sooner.
Your hubby probably KNOWS this is not going to change but hope is a straw to cling to. Is it possible to schedule the test for a few months down the road? Then he will feel supported and hopefully change his mind by the time the appointment rolls around. As the psychologist said to me, the pals need to call the shots because there is so little they can control in their lives. Donna

 

[pittsburghgal]

Nikki and Donna,

Thank you so much for your replies. I feel so badly about telling him I won't take him for the test. He is such an optimistic person in spite of this horrible disease. He does his exercises that the speech therapist taught him each day and each time he thinks the test results will be good and he plans what meal he will have afterward. Each time he is crushed when they tell him that he should not eat.
I feel terrible eating in front of him and have been trying to eat my meals alone with him watching TV in the adjacent room. Based on your reply, I am wondering if I am denying him the social aspects of eating by doing this.
Sharon

 

[Nikki J]

Oh that is so sad! I understand eating elsewhere. I can still eat, my sister can't at all even the tiny taste of pudding is too dangerous. I feel guilty sometimes but she definitely wants to be around when we eat

 

[lgelb]

Sharon,
1) I agree that it seems kinder to eat with him, than separately

2) What kind of tube feeds does he get? It would seem that using blenderized real food that he can select, rather than formulas, would be the way to go. If he is on formula, his system is probably craving more "real food" and through smell and burping, PALS w/ PEGs can "taste" their food to an extent. He could also watch/direct the prep process (chopping, cooking, blending) and feel more connected to his meal.

If you are already blenderizing, perhaps some different recipes, esp. with more flavor, might help. For example, Max, one of our members, posted a recipe for gazpacho by mouth that could be further blended for a tube feed. Some of our members puree steak, seafood, etc. He could use the cooking shows as springboards for his own "creations."

3) I would link not doing another test to (2) as an alternative -- moving on, but in a different direction.

Best,
Laurie

 

[pittsburghgal]

Thanks so much for your thoughts, Laurie. You have been a tremendous help to me since I first discovered these forums a few days ago.
My husband gets Jevity 1.5 (8 cans per day). He has gained weight, which is great, but he desperately misses everything associated with food. I did not realize that I could blenderize real food and give it to him through the PEG. I will try that. He also has a lot of reflux and can't stand the taste of the Jevity so this might be a solution to that as well.
Sharon

 

[Loverly]

He has to realize that aspirating can lead to his death. This is what cause my PALs demise.

I would explain it to him this way. You'd like him to live comfortably as long as possible, and for that he needs to keep his weight up and reduce his chances of aspirating. If he wants some hope to hang onto then convince him that living longer may allow him to receive a new treatment.

I'm sorry that you are going through it.

jen

 

[4tloml]

My husband (PALS) is fortunate enough to be able to eat and that is a huge part of his life, so I really feel for you and your husband right now. My guy is a real optimist, too. Because of that, I'd be tempted to take him for that "last" study, but meanwhile be blending real food as others have recommended. I know my guy will be anticipating some of his favorite things through the blender and down the tube. Perhaps if he's getting that fuller experience with food overall--selection and preparation, the swallowing study won't be so devastating.

Wish you the best with that tough decision.