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Dear C-D Friends,
As some of you may recall my husband fell down a flight of stairs and suffered a subdural hematoma on September 4. He was (mostly) in the hospital for six weeks. He is now in a skilled nursing facility for rehab.
The back story is that my husband has drank (excessive) amounts of soda (Pepsi) for at least five or ten years. Before his fall he probably drank twelve to sixteen 8 ounce glasses of soda (caffeine free-half diet/half regular) soda a day. It was difficult to tell exactly how much as he did the grocery shopping and mixed and prepared his own soda. But, it was probably most or all of two 2-liter bottles a day, or more. At times this excessive soda drinking effected his intake of food and he would eat very little food and get almost all of his "nutrition" and calories from soda. His primary care physician was very concerned about his soda intake and felt that it was very detrimental to his overall health. In addition, he had frequent headaches which she felt were mainly due to not drinking enough (heck, not drinking any water). His headaches decreased significantly when he started drinking more water and cut down a little on drinking soda.
While in the hospital they put him on a "soda restriction" and only allowed him 8 ounces of soda a day. I am a little confused why they did that, but I was told that it was because his blood work wasn't normal. They also sent him home from the hospital (the first time) with a soda restriction. My husband became angry several times because I would not allow him more soda.
Now to the current problem. He has been in a skilled nursing facility for one and a half weeks. He still has a lot of problems with short term memory and basic confusion due to his TBI and previous brain damage. Once he got orientated and started to request Pepsi I have brought him one can or a 20 ounce bottle of soda a day.
However, he has been demanding more Pepsi. During the day it usually is not a problem as I can distract him. But, the last two nights, after I had visited him for six to eight hours during the day and he had his Pepsi he had the nurses call me about 10 PM. Both nights he was confused and said that I "had NOT visited him for days" and that he "had NOT had any Pepsi for days". He wanted me to immediately drive there and bring him Pepsi. Since it was have taken me 45 minutes to get there AND it was already 10 PM at night AND he had already had Pepsi that day. I told him "No, I can't come. It is bedtime. I will bring you more Pepsi tomorrow." Both nights he became belligerent and started swearing at me over the phone (saying "F*** you" etc). I then talked to the nurse and told her that I would be there the next day. What could I have done differently?
Our adult daughter overheard the conversation last night and it was very upsetting to her. She thinks that I am being "too nice" and I don't think that she really understands that a lot of this is due to his head injury. She is also worried that when (if) he comes home that it will become a bigger problem (the belligerence) which may turn physical (it hasn't yet). She is also worried that if he gets all of the soda that he wants the belligerence may just switch to another area (such as demanding to drive or something else).
Part of me is thinking "big deal, why don't I let him drink as much soda as he wants" and the other part of me knows that when he drinks a lot of soda his health is impaired (he eats much, much less, drinks less water, gets more severe headaches from dehydration).
I am also worried about how I should handle this when (if) he comes home.
Although, he does not have Alzheimer's or dementia because of his previous brain damage and his current traumatic brain injury he has a lot of problems with his short term memory. One day he asked for another soda and he had just finished drinking the first soda and forgotten that he had drank it.
Any ideas or suggestions?
Our first periodic, meeting with staff, therapists and family is tomorrow (Thursday, October 29) so it would be nice if I had a potential plan before then.
PS. For the regulars on the Caregivers Forum who have been following his/my story, the nightmare continues. The only SNF that would accept him received an overall one star rating (much below average) on the state's site (out of a possible five stars). And, you can certainly see why they received a one star rating in everything from quality of facilities, to quality of food, to overall supervision, to activities, to cleanliness, to quality of rehab therapy (shockingly poor). However, I have been impressed with (most of) the nursing staff. I feel that is a very important area and the nurses are (in general) more than one star.
It is in a nearby county, so with driving/parking/etc. It is about an hour and fifteen minutes round-trip each day. While that may not seem like a lot to people in big cities, I never lived more than a 10 minute drive to my job in my entire career, so taking that much time out of my day just for commuting seems endless. Plus, a lot of it is over roads that are very dark and isolated and I really do not like driving at night. Even with GPS, I have made wrong turns or even done something a little unsafe several times. But the quality of care in the nursing home is so low that I really feel that I need to be there everyday.
I have not been able to work, at all, in the two months since his accident and due to the nature of my former full time and part time jobs I do not have any sick days. I have to pay rent to the apartment that I rented when he was released from the hospital the first time (and could not return to our condo that did not have a bedroom or full bath on the first level) as well as make the mortgage payments on our condo, plus pay utilities on both places. Needless to say, I am rapidly spending money which I do not have.
However, those things are of minor importance. I just want my husband to get better and to be able to return home to me. We have been best friends for 45 years and married for 38 years.
Last edited by germaine2626; 10-28-2015 at 09:41 AM..
This sounds awful and you definitely have my sympathy. My initial responses might not be very helpful, but here they are:
I don't think your daughter's fears are unfounded -- not the part about you being "too nice," but the rest of it. From what I have heard, a lot of anger accompanies traumatic brain injuries -- and a lot of it (as far as I understand) is "just" the brain's organic response to the event, not necessarily because the person is actually angry (though they certainly would be entitled to that, too). So, I think it is possible that your husband MIGHT react in very unfamiliar and aggressive ways when he comes home and you refuse to give him things he asks for -- and I also think that if it's not soda, it will likely be something else.
The other thing is your wish to have your husband get better. Even though it may be devastating in the short term, I think that one of the primary agenda items in your meeting tomorrow is a realistic discussion of his prognosis. Do they think he will get better? And if so, what exactly does "better" look like? I do understand that whatever they THINK, he could actually do much better than they expect. But I think it will be important for you to have this information.
This does really sound like a nightmare, and I am very sorry you and your family are going through it.
While we here probably can't help you much, I would encourage you to ask all these questions of the doctors and staff tomorrow, so you have the support in this situation that you need.
Frankly I have never heard of a person being addicted like your husband is to soda. It's almost like some part of his brain tells him he must have it or he cannot survive. And you surely must take care of yourself in this too. If he comes home, I would try to have help at home, like a trained aide or person to be there with you.
Hopefully you can return to work soon and not have this burden on your mind so much.
I do wish you the best. This is a difficult, unusual situation. Take care of you first.
You could try holding off on the soda until after the meal. If he hasn't finished his meal (at least 50%), let him know you'll give him his soda when he's done. I did this on Sunday with the tea and ice cream after dinner. There was no argument at all. She finished about half her dinner.
I don't know about the volume of sodas, but they have them in the very small containers which would make it seem like he's drinking a lot more. The only other thing I can think of is to find a way to keep him occupied so he's distracted from the sodas.
Germaine, I understand your desire to help him and want him to be comfortable, but I agree with your daughter about the soda, and not just because it might not be good for him. It is not uncommon at all for people with TBI to become unable to reason and they can even become violent. I really think you need to see what he is going to be like and how he is going to react now, while he is in there, when you refuse him something then when you're home alone with him (how are you going to handle it when he asks for his car keys?).
Are you still working with the Care Manager? I think you need a meeting with everyone involved in your husband's care. I think you need a clearer idea of the extent of your husband's injury, and the likelihood or not of return of function. Is he cooperative with therapy and others who require him to do things he doesn't want to do?
I don't want to put more on you than you already have, but I do not want to see you take him home and be unable to handle him, either.
I would suggest you have help when you do, and it's not just you there, and I would also suggest an outpatient brain injury program as well as support group. The care manager can help you find both (so can the social worker at his SNF, but you do need to be insistent).
^^ Picking up on that idea, could you "flavor" a sparkling water with some spritz in coloring/flavoring I've seen available these days. Mio is the only brand I can think of but there are others....they're "drink flavoring drops or syrups" or "water enhancers."
Put it in a pepsi bottle/can -- and tell him it's soda. IF you can get the taste close enough, I bet he may not even know the difference.
As a person who drinks a *lot* of Pepsi, I can sympathize with your husband.
I don't drink as much as him perhaps, but - if I were to suddenly cut down to 1 can a day, I would essentially go through withdrawls.. because Caffeine addiction is a real thing.
(And caffeine withdrawl headaches are not something to mess with .. literally nothing alleviates them until you've either kicked the habit, or consumed enough caffeine to get back to your "normal" levels..)
Most of the ridiculous hype over the dangers of soda are just that.. Which is to say, that were your husband to have a couple of sodas a day, it is unlikely to negatively impact his health.
However - of course if he is "filling up" on soda, and not eating decent nutrition - that's a different issue, in which the lack of nutrition is the problem.
Trying to get anyone over an addiction cold-turkey (which is pretty much what they're doing to him) is usually a bad idea.. also, not only does he crave the caffeine - if this was a habit to him (and clearly it was a well established habit) - he also misses those cues. The taste, the feel, the fizz.
Personally, I'd buy a case of pepsi (regular, diet, whatever..), and put in his room (in a mini fridge) and tell him he can have 4 a day ... and then make sure each day there were 4 cold ones available to him.
But, clearly, I'm in the minority. (When my mother was in a SNF, the first thing I did was make sure she had a small refrigerator and diet coke - because why take away one of her small pleasures for absolutely no gain??)
If he's going through withdrawls - he's going to feel vile until its over. You can try replacing the pepsi with other beverages.. but to someone who drinks that much pepsi they will be able to taste the difference. (No, not all soda tastes the same, every single soda tastes different from every other soda - you just don't drink it enough to notice the differences..)
As far as his dramatic outbursts - that's a different issue, and I agree seems to be symptomatic of the TBI. Yes, your daughter does need to be more understanding.. however - you may have to come to grips with the fact that at some point he is likely going to be more than you can handle at home and make other plans accordingly.
I'm so glad he got into a facility (even if its not necessarily the best).. I hope that he can make some recovery and that you two can have more time together. (you can celebrate his release with a tall, ice-cold fountain Pepsi!!)
germaine, that amount of sugar is horrifying. He is wearing out his pancreas trying to process all that sugar and if he isn't already, he will be diabetic.
I would switch him to iced tea. Unsweeted. Artificial sweetener does bad things to your body.
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