Alzheimer's Community

Hi Shelley-

I'm really sorry that you and Ron are having to go through an experience like this.

If he's in hospice care, that means his doctor thinks Ron has no more than six months left from the time he was referred to hospice. At that point, they usually just try to keep the patient comfortable and calm. I don't know how appropriate it is that he's being given all those medications, but it does sound like an lot.

Hospice workers are usually the most caring, compassionate people you can find, and I'm surprised that your experience with them is so far from that. This is the first time I've ever heard anyone say a negative word about hospice.

You could get in touch with the Alzheimer's Association and/or local Senior Resource Association (or whatever it is called in your area), and explain the situation to them. They should be able to tell you where you can get help. There is probably a department of elder affairs, or something similar, in your state, that would handle complaints of this kind.

I'm not sure what else to recommend, but those would be places to start. Please let us know what happens. I hope someone can help you quickly.

Carol

Thank you, it was good hearing from you. I really have missed the group. I have contacted a law firm that has as one of their specialties, medical and nursing home fraud. I hope they will assist me. They come highly recommended by our financial planner, who is a friend of the atty, that I hope to hear from. Any attention that I can address to protect these innocent persons, will be a step opening the door to the protection of loved ones everywhere. Happy Father's Day to those of you who are still so fortunate to have their dad's in their lives. The rest of us have our memories.

Hi Shelley-

I hope you'll let us know what happens.

Good luck with all this. You're very kind.

Carol

Hi Shelley,
My heart goes out to you and Ron. I believe that if you follow through with Carol's suggestions, you will get better feedback in knowing the right things to be done. I would think the doctor would have the say about which meds he should be on and how often. Have you asked the doctors advice?

Does Ron recognize you? When you go at 2:30 pm, are you able to communicate? It sounds as if he is so drugged that he wouldn't be able to focus or concentrate.

I really wonder how much care and attention he is getting from the home since he is on hospice. If that were my love, I would pop in quite often at different times of the day, just to see what is going on.

My prayers are with you and I ask for wisdom and guidance from the Good Lord to lead you and keep you strong through these trying times.

Kathy

Ron knows me, I have tried to never miss a day spent with him, this past year. Because of my health I stayed away the past 2 days. I am on the verge of a breakdown, and nowhere to call for help or support that can be trusted. When the home included the Hospice last month, that is when the trouble and drugs became out of hand. It is obvious by the improper treatment,language, and remarks made, that this Hospice is equally at fault. Except for the poor nurse of 38 years that was going to report the overdoses and was fired less than 2 weeks after brought in, of course. I have now contacted a law firm that has a group of nurses and attorneys that has Elder abuse and Medicare and nursing home fraud in their expertise. I was told last night that I will be hearing back from them early next week. I hope he lives so long. Those of you that feel you can trust your Hospice and nursing facilities are fortunate. But you need to know that this does occur and I have not overreacted regarding our experience. Once again, my having no trustworthy organization to reach out to for support is as sad as my thinking I was protecting his well being by placing him there.

Have you tried your local Alzheimer's Association or Senior Resources Association? They should be able to tell you where to go for help, if they can't help you themselves.

Here's a web site that might have helpful information for you.

Carol

So good hearing from you. I know I always say that, but I always mean it! You, Dave, Kathy, and Dr London have seriously given me strength in this lonely time. I think that the best thing I can do now, to get protection for Ron,asap, is through this firm of attorneys. Because of other things I have not printed but have occurred, I pray I will receive help for him. He has never had any pain, just walked the halls, which was an inconvenience. Now the meds can cause more falls and hallucinating. In normal circumstances I would have thought the Hospice Co. would help, I have heard positive reports from other ones here. Including this one, previously. However,time is of the essence and yes, he is asleep somewhere,usually in a chair or occassionally in another's bed whenever I go.This is not acceptable, I might add. The Hospice nurse said "Well maybe you better try coming first thing in the morning, and laughed". (He is a late sleeper normally). I used to do so, but with my arthritis and fibro, it can be rough early in the am. He may only weigh 115-120 now and is never awake to eat or drink fluids, which I have to encourage. And I am pretty luck at getting him to eat some, and I bring snacks. As you know, the illness causes a lack of both, without assistance. The wife and nurse of the gentleman next door is experiencing similar issues now.. I now believe that keeping him home with me as long as I possibly could, was the best thing.So, if I can say anything, please keep your loved ones close as long as you can deal with it. This is my third experience, after both of my parents, but each case has it's own unique issues. Before the increase of drugs last week, he was bright-eyed, friendly, funny, even could read a bit. The abovementioned places can be of help, but not in these later stages of dementia. My goal here is just to reinforce all of you in your times of need, because I truly believe the hope you have makes your loved one feel comfortable and moreover safe, not fearful (even of what they don't know what lies ahead). Last night I spoke with and ordered a class book from his college alma mater. It may be redundant, but he carries that monthly magazine he gets, around with him alot. I have to try...silly, huh? God Bless and Happy Father's Day to all!

Go Girl! Great attitude and yes there are many rewards for caring for our loved ones at home.

You are battling health issues. I want to share with you what my chiropractor told me. His wife also has fibromyalgia and he carries a better quality of magnesium than you can get over the counter. He said this helps her. My daughter also has it and I've bought the expensive magnesium for her, but she hasn't taken it. Stress makes your condition worse. I do hope you can get some relief soon. I believe you are moving in the right direction. God Bless you and Ron.

Kathy

Just wanted you to know that I have been reading this thread and my heart goes out to you. Praying for strength and wisdom for you in this extremely difficult situation.

Thank you.I found it surprising when you mentioned my attitude, as I had a real fallout this weekend with my daughter, because of my daily fight FOR Ron. Her being a speech path made it worse. It does make one sad, but doesn't mean I have lost it! I will follow up on the magnesium, now do you have a better idea for tinnitus other than the over the counter pills?! The ear doc, said hearing aids. Not yet! This is a heredity issue for me,(the loss). Hope the day is a good one!

You are so very kind , especially after knowing you have had so much to deal with. The support and thoughts we can give one another truly does help us to get by, doesn't it?! Here for you, as well, Shelley

Shelley,
I will ask the Doctor how many pills a day his wife takes. I know it's more than one.

I'm here to tell you that hearing aids do help with tinninitis. I have an inner ear disease that causes me to continually lose my hearing. It's Meinere's Disease. The fluid backs up in the inner ear and kills the nerve ends. I had a shunt put in behind my ear to drain the fluids off the inner ear and into the spinal fluids about 10 years ago. It was also supposed to cut down on the noise. I still have ringing and roaring constantly, I'm 'out to lunch' so to speak without hearing aids. When I don't have them in, the roaring is terrible. I am deaf without them. The hearing aids let other sounds in so I don't notice all the noise. A lot of people who don't have such a hearing loss, still wear aids to cut down on the roaring and ringing. I take Meclazine for vertigo. Other than all of that, there isn't anything that can be done that I know of.

Kathy

Hi Kathy Thanks for your personal experience and information! I am on about my 3rd bottle of lipo-flavonoid, but the dr said it only helps 25% of the people. He gave me Elavil, the last thing I need is another antidepressant. As long as my cat can sleep with the tv on, I am okay. I was just at the "25" on the scale, which is borderline, and was told not to worry about the aids yet. Mom was nearly deaf at nearly 91, and her brother had the same. The only person that is annoyed is my daughter, (again) and friends say I am not so loud. But with Ron, Mom, and having to holler into a speaker from a ladder in the central office for 25-30 yrs, I am not surprised. If I keep noise around, I am not bothered. I did warn the girls at the assisted living, that those door alarms could cause problems if they stick around too long! Happy Monday. I spent lots of hrs with Ron, even though he might not have known it was Father's Day. It did us both good. Several ladies fell repeatedly, we have alot to be thankful for, all in all!

Oh, what a terrible situation. There is an Elder Abuse Hotline in every state and they should be contacted as soon as possible. Medical neglect is among the abusive categories. They will immediately begin an investigation.

Usually there is more than one Hospice in a community - Hospice is supposed to offer comfort care and kindness to the patient and his family. Perhaps another Hospice organization can help out.

Hope you can get some relief - you are doing a Herculean job in caring for Ron.

Sending you strength,

Judy