I'm sorry for not bringing this up in the drug trial thread. Joan: You can move it if you want. I just wanted to get it out there. DH has entered a whole new phase the last couple of weeks. He's begun to be totally bowel incontinent. This is a nightmare I didn't expect to have to deal with so soon.
The problem is I work full time. DH attends a day program, but there are a couple of hours between the time he gets home and the time I arrive home. Today I realized this situation won't work. He was such a "mess" by the time I got home. I know I have to hire a home health aide for those couple of hours.
Anyways, I think I'm going to discontinue the drug trial once and for all. I almost stopped participating a while back, but after a conversation with the study doc decided to continue. DH had 3 injections left (he had one last week, leaving two left.) He has only declined since we started this back in Jan. I started a new job a few months ago and continuing to participate means missing quite a bit of work, as the study site is quite a distance away. My boss noticed I've been coming in late quite a bit. I confided in her that DH had been diagnosed with a very serious illness ( I didn't say AD), which was contributing to my coming in late (3 kids too!). She was very understanding, but my point is that I would do whatever it takes if I thought this was helping at all. But DH's decline continues to the point where I feel he's entering the severe stage (doc won't "assign" him a stage #, but I estimate it's at least early stage 6)
What's the point of continuing this drug trial? I just don't see it. I'm discouraged tonight, admittedly, but It seems ridiculous to continue this. I'd rather put my energy and time into finding a home health aide that won't bankrupt us.
Does anyone have any thoughts on this? If not, at least it helps to vent!
Your husband MAY be getting the placebo, thus the reason for no improvement. But who knows?
I know that most people disagree with my opinion on this drug trial stuff, and that's okay, but I, just like everyone else, am entitled to my own opinion. Mine is that I honestly don't see any of them doing much good, except MAYBE delaying the inevitable for a few months. The doctors NEED trial participants, and that is why they will talk you out of leaving. Yes, eventually, one or more of these trials will lead to a drug that may help, but if you don't feel you want to continue, I'm one who agrees with you. Getting the best quality of life and care for both of you seems more important at this point. I'm sure you will get plenty of opinions on the other side, but that's mine.
In our case, I feel it's more important for Sid's anger and depression to be under control, so he can live a peaceful life, rather than participate in the trial and delay the anti-depressant drugs. It's just that he wants the trial so badly, that I can't take it away from him.
Kelly - Our United Way office here in Fort Worth has an Area Aging section with "respite care" money available for workers to come into your home, either someone that you hire from a list of providers they share with you, OR, you hire a family member and they pay that person directly...it was a maximum of $1200 and you had to use the money within 6 mths, but it might be something that you have in the area where you live too. Might be worth checking into. It was called "Respite Care" and the person to be cared for had to be 60 or older. (I just read on another post that your husb is 54, but you might call anyway & see if you can get this $$$ for him) Another idea might be to place an ad in your local newspaper...here in our area, the hourly wage paid by local agencies is only around $10 max...mostly they get about $8.00 an hour. If you advertised & paid about $11 per hour, perhaps you could get someone & not have to pay an agency the $16.50 or so they usually charge, plus many of those places have a "four hour minimum" that they charge. I hope you'll be able to find someone, and very very soon. Know this is stressful for you ~ Sending you hugs!!
joan, no. I don't disagree with you on the subject of trials. I didn't know they existed until I came here, then thought about it and decided no, we weren't doing that. Several reasons including the fact that since my husband possibly doesn't have Alzheimer's but another dementia those trails don't make sense for him. (They say more than half of all Vascular Dementia patients have Alzheimer's too so it is probable that he has both.)
It might be different if we had discovered the dementia at a very early stage. Or if he was 20 years younger. Or...
But I am not chasing after rainbows.
On the other hand when I saw THE FORGETTING there were a couple of things they talked about there that I would have let him do, not for him, but for the future patients. And it they want an autopsy, they (whoever they are) can have one.
Kelly, I wouldn't blame you at all for discontinuing the drug trial. Please don't feel guilty about it. Every situation is different and my heart goes out to you for what you are going through. We participated in the Flurizan trial with no positive results. We could get into the Elan or the Dimebon trial at this point but my DH doesn't want to go through the tests, etc that is required. For the Dimebon study they have to off aricept and namenda for 90 days. I'm afraid to take him off in case of a rapid decine.
My heart goes out to you. You have done the best for your family. I can't imagine trying to raise three young children and taking care of someone with AD. You've got to do what's right for you. Do not feel bad about not continueing with the trial.
Kelly, I am so sorry for what you are going through. I, too, support your decision. You must do what is best for him, you and your family. Like Trish said, I can't imagine trying to raise three young children and take care of a husband with AD at the same time. Take care of yourself.
Agreed. Nothing seems to improve things for the current patient, and you are the one who has to consider THAT. I made sure that in this recent hospitalization, my husband was NOT on the teaching rounds, which is another one of those things that in theory you really want to support but in reality it means a lot of pain and discomfort and frustration.
Now, I'm in an "observational study" for osteoarthritis knee pain (it's an outgrowth of the Women's Health Initiative). That doesn't bother me at all; they just do tests once a year. THAT I'm willing to go along with. And autopsy. That's fine.
in re the fecal incontinence - you might want to look at bigtreemurphy.com if you haven't, for tips... It does seem like that's starting awfully early for you. Getting someone to come late in the day for a couple of hours may be hard to do, unless you can find a neighbor, maybe..
Kelly, have you asked the trial people whether the fecal incontinence might be a side effect of the "real" drug? They might have some ideas on how to handle it. Or googled to see whether it was reported as a side effect in the earlier clinical trial phases?
I also agree that Kelly you do whatever you have to do to make this as easy for you as possible. i agree this incontinence could be from the trial meds or a side effect that may stop when hes off it. if you can afford the agency help it may ease the stress and you can start right away. they are trained in addressing these issues and can have him bathed before you come home. many of reg for hire caregivers dont want to deal with incontinence and it may be harder to find. if you ar in a hurry the agency can work in the meantime while you hire private help. its also tax deductible the paid help, dear kelly, we here all hope you find the answers that help your situation soon. divvi
Kelly, you have so much on your plate. you remind me of a woman in our church has 3 young children: a 7-8 year old and 3 year old twins. The twins were born early and in a pre-mature condition. One of the twins has had 2-3 neurosurgies and had shuts put in. Neither child talks yet. One does walk and they both get physical therapy 2x week. She is trying to finish her MA at the university. Her DH had to quit his job because he developed brain cancer. Now, after the radiation/chemo, he has EOAD. He's 37 years old. I have NO idea how she does this.
a committee at church takes meals to her home 4-5 a week. One lady goes over there and uses the vacumm on Fridays. Another woman has a key and she goes to her home a couple of times a week and does laundry.
The world is full of hurting people and they all need a helping h and. The world is also full of wonderful people that will give a hand's up frequently.
I find I don't have to go very far or look very far to find someone who has more troubles than I do. After reading these posts, I find mine are not so bad. Nothing I can't handle with lots of prayer.
I dond't know. All I do know is that he can't work at all. And, now she needs someone to look after the twins while she is finishing her MA. She is very determined to do that because then she will be able to get a better paying job. She is very much aware that she is going to be the bread winner soon.