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I am so frightened and sad at losing my beloved husband who is only 67 and has had dementia since his early 60's. I am taking him for IV treatments to include chelation to eliminate plaque in the brain, vitamins, glutathione. The nurse practitioner says that they are necessary for him and that these IV treatments are not harmful. I am not sure. And I don't know if they have helped at all as he is still declining. Would he have declined faster has he not received these treatments?

I have also taken him to a hyperbaric chamber to get more oxygen into his body and brain. I pay for all of this out of pocket.

We have visited a hormone doctor and gotten on lots of specific supplements and testosterone.

We have also gone to a nutritionist to see what nutrients he needs in foods or vitamins. And an herbalogist to see what herbs might help.

We see our primary (who is not a gerontologist) physician, a psychiatrist, a sleep specialist, a neurologist. We have had an MRI, EEG, psychoneurological testing, anything they recommend.

I have had his ears, eyes, teeth, blood, feet checked to make sure he is healthy. He seems to be losing his sense of pain as he is now cutting his big toe nail off the skin.

If I should stop these treatments outside of his Aricept and fluvoxin, can I deal with the guilt of thinking I am not doing EVERYTHING that can help him in any way.

He is very gentle and is happy to sit in front of the TV and watch the same shows over and over again. As long as he gets his meals and I take him out sometimes, he is very happy.

Do you think that I am overdoing his treatments? What would you do if you were in my position?

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Thank you all for your help. I feel better about not continuing all of these treatments and expensive supplements, herbs, etc. I am too tired to keep going on like this. Looking for the stuff, driving him to treatments, paying for treatments, trying to figure out if they are necessary or not, etc.

It was our anniversary today and I took him for a steak dinner, a movie, and stopped at the carnival in town. He rode some rides that gave him a thrill. He had fun just like a kid.

The podiatrist did say that one of the first things to go is the feeling of pain. That is why he is peeling the toe nail off. Even though he has not been classified as having diabetes, I do think he is there or very close.

I have found very few doctors in this town who truly understand medical care or are true scientists who think outside of the pharmaceutical shelf. The psychiatrist thinks that Alzheimer's and dementia are one and the same thing. He has no idea on how to treat it. In my research, my husband has more frontaltemporal dementia. And The neurologist was such an opinionated prima dona that I just don't have confidence in him, either.

I don't know if VA would be any better.

I would like to try to take him to a specialist, but I am afraid Mayo is too far away from us and would be very difficult for me to take him. I may try a gerontologist here in town who is reported to be very good. Long waiting list, though, to get in.

I will try to maintain a peaceful and contented quality of life for him as long as I have him. I WILL try not to let that dreaded "caregiver guilt" get the better of me. I won't be easy. Especially with his toxic daughter who tried to steal his inheritance from him.

You all are wonderful. And I thank you. God bless
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It sounds like your husband is quite calm & content being at home with you. There is no miraculous cure, if there was, me and most of all the spouces out there would have found it by now, but I don't fault you for trying your best. Just accept it as it is & hope & pray along with all of us that a real cure is right around the corner.
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I think you are desperate which is understandable with such a devastating diagnosis in someone so young. But I fear you're being preyed upon by charlatans who are charging you big bucks for useless treatments. I agree that if those treatments worked, everyone would be doing them. And reputable doctors don't sell supplements or vitamins. Doctors who do that (out of their office) are quacks out for a quick buck. It makes my blood boil that you're being taken advantage of in this way.

I'd follow JeanneGibbs advice and get your husband to a reputable medical center for an evaluation and then get recommendations from them for local doctor(s) to treat your husband further. I am so sorry you have to deal with this. Don't throw away money on worthless treatments that you will probably need for his further care. {{{{Hugs}}}} to you in this difficult time .
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What would I do if I were in your position? I was in your position, except my husband was in his seventies.

What I did was take him to a reputable clinic that specialized in dementia research and treatment. (Mayo Clinic, Rochester MN) His PCP was useless for dementia and we switched to a geriatrician with a sterling reputation. We continued seeing the sleep psychiatrist who made the initial diagnosis. All this is expensive!! And it was all fully covered by insurance, because all of these professionals worked within mainstream medicine.

I also read a lot about the dementia he had (including material provided by his neurologist), and joined a caregiver support group, and attended an all-day conference about caring for people who have dementia.

With the encouragement of his neurologist I made plans for activities we could do together -- concerts, museums, fairs, car trips, cruises, even a train trip with a sleeper car. If I hadn't spent money on these things I wouldn't be quite as broke as I am now but I have no regrets.

I got him involved in a golf league for people with disabilities, and he joined a senior bowling league.

My goal was never to cure his disease. My research convinced me that that was not going to be possible. My goal was to ensure that the time he had left on this earth was as high quality as it could be.

Personally, I would be very wary of any treatments not covered by insurance. That typically means they are "experimental" or not proven to be effective.

Personally, I would stop paying for "doctors" who are not MDs and for treatments outside of mainstream medicine UNLESS you can actually see good results. And I would use some of that money on activities your husband would enjoy. Go to the children's museum, borrow their wheelchair, and enjoy all the exhibits with him. Maybe visit the gift shop for a puzzle he could do at home, or a video he would watch. Let him have plenty of downtime just watching tv, but also provide some activities breaks. Find a local seniors exercise program (for us an arthritis exercise class in a warm pool was excellent.)

Invite friends over occasionally. Go together to your community senior center. They often sponsor outings and bus trips you both might enjoy.

The truth is, no matter what you do or don't do, dementia is going to continue its ruthless course. You are going to lose your dear husband much earlier than than you expected when you said "for better or for worse, in sickness and in health." Make the most of the days you have left. And don't waste precious energy feeling guilty about what you have no control over.
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Dee, I think that most of the things you are doing are a waste of time and money. This is just my opinion, but there is no evidence that any of the things you mentioned work. If they did, everyone would be doing them. You see they aren't working with your hubby. To tell you the truth, I would switch doctors and get a different healthcare team.

Something I wondered if there was a chance your husband has diabetes. Loss of feeling in the toes can happen with diabetes.

Hyperbaric chamber! Oh, my goodness. Does he have COPD or something? Your blood is only meant to carry so much O2. Your cells can only use so much. Hyperbaric chambers are so Michael Jackson. We saw how much good they did him. This reminds me of when I was a volunteer with an HIV/AIDS group back in the 1980-90s. There were all types of quack treatments being sold to people who just wanted a little hope. Hyper-oxygenation with either O2 or peroxide were two things that were pushed. They, of course, were a waste and the latter was potentially harmful. Sodium peroxide is toxic to cells, so why would anyone want to put it in their blood!!

The chelation I don't know. It isn't DMSO, is it? If it is, forget about it!

Sorry to sound so questioning, but I have seen a lot of quackery since I worked with the HIV group. The best idea is to research these techniques to see if there is any scientific data supporting their usefulness. (This doesn't mean testimonials, since those are not scientifically controlled, but usually sales pitches.) If there are not data supporting the usefulness, then don't waste your time and money.
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One treatment I would think twice about would be the testosterone, unless your hubby is actually very low on testosterone. According to the Mayo Clinic, testosterone therapy can higher the risk of a heart attack, plus carries various other risks, including contributing to sleep apnea, stimulating noncancerous growth of the prostate, stimulating growth of existing prostate cancer and blood clots forming in the veins.
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