Community Chat

[sassenach1]

On 1/20/2014 bigsister said:

I am so sorry you have to go through this. I know what you are dealing with as my DH had Alzheimer's Disease.

If you haven't done so yet, do get in touch with the local Alzheimer's Assn. in your area. They will be very, very helpful.

Good luck.

So very sorry about your DH. Alzheimer's Association is a wonderful organization.

[sassenach1]

On 1/20/2014 qualitygal said:

My dad has it and is now in a nursing home. It breaks my heart, but we had to. His sister passed away from it. Some day my siblings and I could get it. I'd love to know how to prevent this. It's horrible.

For now, I think all we can do is eat very well, exercise, keep the brain active and stay away from as many toxins as possible. Best of luck to you.

[sassenach1]

On 1/20/2014 qualitygal said:

My dad has it and is now in a nursing home. It breaks my heart, but we had to. His sister passed away from it. Some day my siblings and I could get it. I'd love to know how to prevent this. It's horrible.

For now, I think all we can do is eat very well, exercise, keep the brain active and stay away from as many toxins as possible. Best of luck to you.

[sassenach1]

On 1/20/2014 glb613 said:

They need to know what causes a disease in order to prevent it. I feel sorry for anyone who really believes the medical community and drug companies block finding a cure to make money. Just like most conspiracy theories, it just isn't true. Educate yourself about Alzheimer's disease, join a support group, learn how to manage the disease and the Patient. It will do you a lot of good and be more constructive than blaming others.

Oh, I have been educating myself about this disease for many years now. Blaming others? What do you mean? I have no conspiracy theory. There is no conspiracy.

My O/P was clear. It IS all about money. There is no money in prevention.

[sassenach1]

On 1/20/2014 SoX said:

Thanks for this thread ... I'm trying to learn as much as possible about this disease that has claimed my best friend. It's heart-breaking to be with her and talk about things from years ago that she now has no memory.

Just yesterday I was reading about an upcoming event at our flagship library ... one of our favorite authors will be lecturing and discussing his current book. This is something she and I would have attended together ... she won't know who he is now.

I miss our shopping trips ... our just bumming around trips; lunches in the Walnut Room; taking a silly square dance class (we laughed about this one since we knew we'd have no use for it) ... driving to a new mall just because.

I miss my friend.

Oh, Sox,

I understand and I sympathize. She is still in there somewhere. I know she still loves you.

[sassenach1]

On 1/20/2014 Burnsite said:

My siblings and I shared in the care of my dad, and the death process lasted 20 years. It is very, very difficult but (as I am sure you know) also has its rewards.

When he was able to get around, he went to an adult day-care facility that was very good. As he became more ill, we had visiting nurses to work with him several times a week. That gave a much needed break to whomever was caregiving at the time.

Take care of yourself, too, Sassenach. The research on caregivers is that they don't go to their own doctor's appointments and that the stress is extreme and the damage it causes can be lasting. So try to get some help so that you and your family members get a break sometimes.

ETA: I see you are sole caregiver: try for visiting nurse services, daycare a day or two a week, if your mother is able. It will help. I would just take a long walk and come back feeling better able to deal with things. ((hugs)) Sole caregiver is a heavy responsibility.

When I was caring for my father, I found that it helped us both to get in the car and drive to the ocean; he loved to look at the sea. He also continued to love music of his earlier days, and that would lighten his spirit and therefore lighten ours.

My impression is that they are finding out more about the process of deterioration but haven't found a drug that really halts it. There is also early diagnosis. I honestly don't know how I feel about that, given that so little can be done.

Thank you for the kind words. I am sorry about your father. It is a horrible disease. My mom does love music and you have reminded me to help her enjoy that.

[sassenach1]

On 1/20/2014 57babe said:

Sassenach,

I think that if the doctors & neurologist's involved in diagnosing dementia and/or Alzheimer's disease suspect that drugs (no matter if OTC, prescription or street drugs or alcoholism) is the cause of brain damage resulting in dementia -- they (the doctors) should make the family aware of this.

I know of people with brain damage and dementia that was clearly caused by long-term use of prescription drugs. Their adult children are not completely aware of their parents prescription drug use and believe that their parents dementia is due to a genetic pre-disposition of having dementia/Alzheimer's disease.

Because of their (false) belief that their parents dementia is due to genetics (and not to their parents 40 some odd years of taking potent prescription drugs) these adult children are worried sick that they are going to "inherit" the dementia "gene" that their parents have due to genetics, even though these adult children have never taken prescription drugs and live a much healthier lifestyle than their parents lived.

The doctors who are caring for their parents have told them that the cause of their parents dementia is "unknown".

Yes, there are many types of dementia and some of those dementias have a genetic component -- and certainly families should know about that. But there are also dementia patients with a history of long-term drug use (prescription or otherwise) and that history should also be made known to the adult children, IMO.

I'm so sorry that your mother was so ill and had to take so many prescriptions. I am also sorry that she ended up having dementia. As I have said, I've observed the same issues within my own circles of friends and family. These were people who were suffering with chronic pain and other illnesses and they trusted in the medications to make them feel better.

I'll be the first to say that there are no easy answers to this problem. But at the very least, doctors should tell the family of dementia/Alzheimer's patients the truth if they suspect that long-term drug use has caused the dementia. That bit of information might help ease the minds of the offspring of parents diagnosed with dementia.

I pray that God gives you the strength to go on in the care and ministry to your mother. May the Lord bless and keep you both in the palm of His hands.

57 babe- Thank you. I appreciate the info and you are right: there are no easy answers. Our doc does feel that the long term use of so many Rx drugs and her vascular issues probably led to this. Of course, that is not a certainty, but a likelihood.

[sassenach1]

On 1/20/2014 Gooday said:

I have posted this before on the Health site.

My mom passed away from complications of Alzheimer's and Parkinsonian symptoms. It was two weeks after her 75th birthday. She had been being treated for depression for 3 years prior. In hind sight it was the early onset of dementia or whatever you choose to call it.

Also, my folks spent half the year in one state and the other half back home near me. She became withdrawn and lost her lust for life. She laid in bed all day. When she returned home she saw a PCP. She never had a physically sick day in her life, was never on a medication and followed a Meditteranean (sp) diet as she was Sicilian. She was never more than 5 lbs. above her ideal weight. She did not smoke.

After the evaluation the doctor knew immediately. We sent her for further testing at Rush Presbyterian St. Luke's in Chicago. More tests were performed and in talking to the doctor for the follow up he informed us that she indeed had dementia and that it was in fact, advanced. She knew what was happening. She slept all day and hounded my dad at night to help her and give her pills to help her. Nothing did the trick. I cut my work week down to 4 days a week to help them both. Fortunately, I lived on the same street.

Fast forward a few months - it was becoming increasingly difficult on my dad. My mom lost the ability to communicate. She developed a terrible UTI that landed her on the psych ward of the hospital because 24 hour private care to watch her just was not possible. It broke our hearts. My dad and I talked with her 2 sisters and they agreed that finding a good facility was in everyone's best interest.

By the grace of God, there was a facility 10 minutes from our house that was strictly for ambulatory dementia patients. The downside was that they accepted NO insurance. Private pay. From 10/04 to 12/05 my dad paid 4,200. per month. It was worth every penny of both their pension checks and S.S. income.

Both he and I went to a support group for a few sessions but it just was not for us. They are wonderful for some and thankfully we have a terrific support group of our own. We both visited her every day and for my dad, sometimes twice a day.

I really have no advice but that there are no right or wrong decisions. Each situation is similar but different at the same time.

I just wanted to share our experience.

Hugs to you!!

[sassenach1]

On 1/20/2014 pistolino said:

On 1/19/2014 Predsfan said:

I can only pray for you, because you are going to need it. If you can find a support group or family that can help, please do. DH went through this with his mother and the doctors were no help, the family ignored it and spent all their time fighting each other about their thoughts. It's a horrible thing to witness and to deal with when it changes the people you love.

I completely agree. It's like a years-long nightmare. You have my prayers also, OP. Try to get as much help/support as you can outside the family if they won't help - don't allow the disease to claim 2 people.

I still really haven't recovered from the experience. I feel like it damaged me in a way, but caring for my mother was the right thing to do and I have peace about that.

My recommendation about the drugs as a layperson caregiver - if money is an issue with your loved one, don't kill yourself trying to get money together for the usual Aricept, Namenda and Exelon. Not worth it. In our experience, my mother's dementia started about late 50s, wasn't very apparent until she was 67 and she was dead at 70 and she took all of it and it did her NO good at all.

I completely agree with all you said. And, thank you. I am sorry for what you went through and I understand and wonder if I will ever be the same!

[sassenach1]

On 1/20/2014 pistolino said:

On 1/20/2014 Lila Belle said:

So much misinformation has been thrown out on a subject where only factual and researched info should be shared.

With this disease, the caregiver ends up with more knowledge than the professionals. Believe me. I would listen to a caregiver over a neurologist any day.

In my experience, the most helpful doctor we saw was the geriatric psychiatrist.

Caregivers live and breathe it every day. ITA.