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i need a friend who understands this disease
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suites posted:
hello my name is paddy i am from dublin ireland.my wife Breda has being going through alzheimer's now for 7 years that i know of.I care for her at home and sometimes I envy people who have alzheimer's and are going through the trauma in slow stages. I do not mean that in any perverse or disrespectful way i have the greatest respect and sympathy for them. Its just that Breda was diagnosed as having early onset alzheimer's and was put on medication from day one ,aricept, risperdal, ebixa, and after about 4 weeks it was like as if someone turned out the light on our life Breda became very tired and sleepy almost zombiest and began to need to be fed clothed and bathed with assistance . Breda also became totally incontinent doubly so. Breda has suffered 4 toxic clonic seizures over the past 12 months and was hospitalised each time. Before these seizures Breda would not sleep and became very agitated not aggressive but very agitated like a person in very bad pain . I would call out the doctor and he would say its the disease and not prescribe any meds to help this condition can anyone here please help me to understand this problem please thank you in advance.
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cjh1203 responded:
I'm so sorry -- early-onset Alzheimer's is especially heartbreaking because the victims are so young.

I have an uncle who has dementia, not specifically diagnosed as Alzheimer's, and one thing that I find really frustrating is that so many doctors just dismiss whatever is going on with him. Nobody seems to have the interest to take his symptoms seriously.

In the US, Risperdal isn't approved to treat Alzheimer's patients, but I don't know if that's the case in Ireland.

Would it be possible for you to find a doctor who specializes in Alzheimer's? Your wife's doctor should be willing to try to adjust her medications and try different things. If you find a specialist, he/she may be more likely to do that.

Good luck. My heart goes out to you.
 
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suites replied to cjh1203's response:
thank you so much for your kind reply its very much appreciated
 
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Byroney_WebMD_Staff responded:
Dear Paddy (suites),

My condolences to you on your wife Breda, being diagnosed with early onset Alzheimer's. I agree with Cjh1203 that if you can find a doctor who specializes in Alzheimer's, that might be a big help to you.

Here's an article on Alzheimer's Medications , but remember--these are U.S. drugs, and may have different names or not be available in Ireland.

I also found that the Alzheimer's Society of Ireland is based in Dublin (this is not a WebMD site and we cannot guarantee content). You may want to check our their resources and give them a ring.

Remember that taking care of yourself is very important. Especially after seven years, give yourself some respite through family, friends, or support groups.

Write us back any time you wish--we would be glad to hear an update on how you and Breda are doing.

Byroney
 
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suites replied to Byroney_WebMD_Staff's response:
hi Byroney,thank you for your guidance
Breda is in Hospital at this time she had a grand mal seizure and is being observed at this time. I do believe that the meds she was on was a contributary to these seizures. Breda is much more alert since I stopped the Seroquel it is with sad regret that I did not look into its side affects earlier but with the shock of being told Breda having this disease I trusted the Doctors and presumed that they would do their best for us. thanks to all here I have learned more in a few visits than i did in the previous 7 years thanks all . kind regards Paddy
 
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cjh1203 replied to suites's response:
Paddy, I'm so sorry your wife has had another seizure, and hope she's out of the hospital soon. Alzheimer's is difficult enough without having the worry of seizures on top of it.

I think that most of us trust our doctors so much that it doesn't occur to us that we might need to question some of the things they do. Please don't blame yourself for not looking at the side effects of Seroquel sooner -- it's understandable that you would think your doctor had prescribed it appropriately. You have a lot to contend with and there's only so much you can do.

Were you able to find an Alzheimer's support group near you?
 
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suites replied to cjh1203's response:
thanks cjh 1203 .I have been in touch with an alzheimers support group but alas the times they meet would not suit me as it would require me to leave Breda unnatended so its a no no. thanks for being a friend here i really appreciate it
 
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cjh1203 replied to suites's response:
Paddy, do you take any breaks from caring for your wife?
 
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suites replied to cjh1203's response:
no i just like to care for Breda hoping i give her the best attention its hard i know but i want to keep trying.i hope the medics sort out her meds this time .thank you for being there. paddy
 
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cjh1203 replied to suites's response:
Paddy, I understand that you want to do the very best you can for Breda, but if you never take any breaks, it's taking a tremendous toll on your physical and mental health -- you may not even realize it yet.

Caring for someone with Alzheimer's is one of the most stressful jobs there is. For your sake and Breda's, you need to just get a break once in a while, even if it's only a few hours a week. Caregivers who do not take care of themselves often end up ill and that compromises their ability to care for the loved one.

To take a couple of hours a week and get advice and support from others who are going through the same thing you are would be such a huge benefit to you and Breda. You are carrying an enormous load all by yourself, and nobody can sustain that. Please consider trying to find someone to stay with your wife while you attend a support group meeting. Just try a couple of meetings and see if it helps you.

You need to take care of yourself in order to take care of Breda. You're obviously a very loving husband, and I'm sure that Breda would tell you to be as kind to yourself as you're being to her.
 
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Byroney_WebMD_Staff replied to suites's response:
Dear Paddy,

I am sorry to hear about Breda's seizure has her hospitalized. I hope she is able to leave soon and return home to you.

I share Cjh's concern about your not taking any breaks. Even if you take just an hour or two for yourself once a week, it would be something. A friend, family member, or professional caregiver can give you these breaks and they're good for you as her husband and Caregiver .

Remember, you can take pictures if Breda can look at them, of what you see while you're out. Whether it was to a museum, park, or even a library, it helps you keep your mind active, reduce stress and gives you something new to share with Breda.

Write us back and let us know how you both are doing,

Byroney
 
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suites replied to Byroney_WebMD_Staff's response:
Thank you both for your support and understanding it is heartning for me to know that I can share my thoughts and feelings about this terrible disease with someone who understands its devastation.I promise to take on board your advice regarding a break and will try to get a plan going. once again my heartfelt thanks to both of you. kind regards Paddy
 
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solayo replied to suites's response:
Hi Paddy,
I totally understand your situation. I have been the sole caregiver for my mom who has Alzheimers Dementia. She was sleeping less and less. The doctor recommended medication for her to sleep at nights. This had her blood pressure up on minute then severly low the next. I had to take her one night to another doctor when I noticed that she was not responding. The other doctor perscribed Halitol(sp) and Cogentin which i gave her for a week because she started exhibiting Parkinson like symptoms. Another doctor told me she should have never been perscribed those drugs and perscribed something else which I never gave to her as I felt like she was being used like a guinea pig. It is difficult for those of us that do not live in the United States as I believe the US has the best treatment and care facilities for persons with this disease. Mom has been on aricept for years now. During the night she gets up several times, but I always put her back to bed. She had a seizure a month ago. The first ever which the doctor said was remarkable considering she has had the disease for years. No meds were perscribed thank goodness. From one caregiver to the next, I can tell you to seek outside assistance.Even if it is for a few hours a week. You will become physically tired and it is mentally taxing. In order to help her, you have to help yourself also. Thanks for sharing.
 
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suites replied to solayo's response:
Hi Solayo thank you for sharing with me and I hope your Mom will be Peaceful for you.I share your frustration at the doctors , it is very trying when your in dispair with worry over your loved ones health and they just add to the trouble by giving meds that are not suitable at all.Solayo I had an Appointment today to see one of the team who are looking after Breda in Hospital barely 3 minutes went by and his Bleeper beeped and that was the last I seen or heard from him.So please God Solayo tomorrow may be better for us. Once again my deepest thanks to you for sharing with me. Kind regards Paddy
 
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Byroney_WebMD_Staff replied to suites's response:
Paddy,

I am so sorry you didn't get an update on Breda today. It was very unprofessional of him (the doctor who was called away) not to have followed up with you by phone or had a nurse or colleague contact you for him.

If you do not get answers tomorrow, ask to speak to the head nurse, patient care advocate, hospital administrator--whatever it takes to get answers. I'd suggest being polite, but firm that you need answers and Dr. So-and-so left you in the dark yesterday, and didn't follow up, so today you need to know.

Please let us know how you and Breda are doing.

Solayo, how are you and your mother doing?

Byroney


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