Two of our members brought this article to my attention. The direct link is under Breaking News on the home page - www.thealzheimerspouse.com, but you can copy and paste if you want: http://www.nytimes.com/2011/01/01/health/01care.html?_r=1
IMO, this approach makes so much sense, it's hard to believe it is not universally utilized.
Great article! Thanks for making it available. It's true about the emotion being the last to go. I notice that when my daughter visits DH, her stepdad, that he is happy and bright the rest of the day.
One of our sons sent this to me, and I was going to forward the link to you; but you're ahead of the game. Son sent it w/subject line: Well, Duh. Doesn't take a rocket scientist to see the results of much of this--just observation by staff or family caregiver. My hb who's never had an interest in art is in an art group and happy to be there doing a variety of things. The socialization with others like him is BIG, too.
I love the treatment philosophy in the article. I agree that it would be a much better approach than what is done in most facilities. Speaking as a chocolate lover, I can attest that it is good for whatever ails you!
The NYT has had quite a few articles about AD this past year and I agree that this approach seems wonderful.
I do however have a question. Can you let your spouse get cleaned up "whenever they want" when they are incontinent? My DW is, and getting her all cleaned up is what causes the worst of her aggressive behaviors. I have tried everything to make it as pleasent an experience for her as possible. I am currently reading "Bathing Without A Battle". A very good book with good suggestions. So far, NOTHING works for her as far as bathing(sponge bathing is what we do) and cleaning her up. She is on Seroquel. I feel like I am missing something.
Certainly not regimented in any way here. We're dealing with Vascular ementia, not AD, but long ago, when first dealing with Mental Illness, I was told to pick my battles, as there would be odd behaviors. Basically, most aren't worth the stress and energy. The battles then, and now, are generally involved with safety issues-physical or medical. Even then sometimes there are creative ways around--"Only clean people can ride in the helper's car to go to the store." He's always been good about taking his meds, because he does know they help.
Biggest issues now are smoking--he's quitting again--was a heavy smoker and hasnt forgotten, but must not now because it triggers TIAs; and dieting to lose weight--has the idea he must do so, but his idea is a starvation diet.
He sleeps when he wants, eats when he wants, etc. Such things really don'tmke a big difference for me as long as he can be up when he needs to be.
Getting my DW(a most independent, stubborn and private gal) to get cleaned up to get a reward doesn't work as she insists she is clean! All I have been able to do is promise it won't take very long and ask her permission and help. I just don't feel that I am doing a good enough job.
We have aids as well, and I have to help them or she will quite literally knock their blocks off!
We have talked here before about giving them what they want - they are dying. My hb has his ice cream every night unless we run out and didn't get to the store. He also has his chips and cookies. He has lost weight though cause he has cut his eating. The new belt we bought recently he has put two new holes in it so he can tighten it up.
I love the approach of this place. My mom had her baby doll - she would never put her down unless she had to. Now it sits in a place of prominence at my sister's.
I let my DH eat what he wants and do what he wants right now. I got him a music keyboard for Christmas and if he wants to play it all day, that is fine. What else is he going to do. And chocolate and ice cream are always around. If he is happy, than I am happy.
guitarguy, so sorry you are having such bathing issues with the incontinence. we seem to all go thru the bathing issues at some point. can you talk to dr about upping the meds to get her a bit more complacent and not so aggitated at bathtime.? may of us have used a dose of an added med esp right before bathtime to calm them down. i wrote on another site that i opted to use a shower chair inside a small childs swimming pool and DH had no issues sitting on the chair out in the open. the shower stalls caused all kinds of issues. plus the shower hose spraying caused fear. if you try the shower chair you can pour warm water after soaping her up sitting down and can dry and dress her sitting as well. use a large plastic cup to drain the pool or a towel. its better than nothing. i can empathize with the bathing issues. never easy. we have to use all we have at our disposal to get thru this. if they are incontinent they must bath or skin issues can start = good luck we too have gone thru the whatever they want to eat is good phase. :) divvi
Divi, Thanks. My DW is on Seroquel. 50mg in the morning and 50 at night. She is also on Keppra. 500mg and 500mg at night. The keppra is quite sedating and it does help her sleep through the night thank god for both of us.
She has been in the Hospital 7 times this past year. Mostly due to fainting spells/seizures and blood clots. Two DVTS in each leg and a PE in her left lung. She was also on cumidin treatment for 3 months.
We wash her up ( I have home health aids) in the morning after we give her the meds. It doesn't help. She yells, screams, bites, punches... you name it. And this is when myself and the aid are working together. I feel like I am in a boxing ring. She is only 59 and very strong. I take advil almost daily. She isn't as bad when I change her and clean her up myself, but she wants to get it done so fast, that I cannot do as good a job as I should. I am more exhausted now, with the aids than I was before. 2010 has been the year from hell. She is most surely in stage 6e.
The hospital staff and social workers kept talking about placement. I think most NH would kick her out in less than 15 minutes. I want her with me, no matter how much she fights getting cleaned up. Her emotions are now almost out of control and she cries so much as she seems to be more aware of what is happening to her.
She talks about herself in the third person. She says things like "She's afraid she's dying." She says she loves me and I'm a beautiful boy, just before we start to get washed up, and then she proceeds to rip my arm from its socket. Screaming "What happened to me!!!" How the hell do you answer a question like that?
Once she is all washed up, she is the sweetest person in the world. Her old sweet self. Split personality. I don't think a bucket full of pills would calm her down when she feels she is being assaulted for no reason she can comprehend.
I can't fight everything. Sid has diabetes, but if he puts up a stink about wanting something he's not supposed to have, I let him eat it. At first, his diabetes doctor would give lectures every visit about sticking to the diabetes diet, and losing weight, and going to the nutriton classes. One day, I took him aside, and told him the situation - that I didn't have the time or energy to be the constant food police, and Sid could not remember what he was told from one minute to the next, so attending class was a waste of time. And arguing with an AD patient is futile. He was kind, understanding, and just added another pill to the regimen. We have not heard one word since about dieting and classes.
I used to try to engage Sid in activites other than TV, when he's home, and not on an AD outing or activity. But really, what is the point in arguing? If he wants to watch TV, I let him watch TV. It's not like he's all of a sudden going to start a deep, philosophical discussion with me instead of watching TV. Or decide to learn to play chess.
I think I mentioned previously, that I know of a dementia facility that built a beautiful outdoor garden designed specifically for safe pacing. If they need to pace, let them pace. There are gardens and benches in a circle. Completely fenced and attached to the main facility. They can't get lost, and they can't wander away. They can pace in peace.
The idea is that WE have to understand THEIR world, we CANNOT make them understand or live in ours.
The only problem with letting them eat what they want is what happened to my wife over Christmas - too many rich desserts put her into diabetic coma, requiring hospitalization to get her out of it. I'm going to watch the desserts and candy more closely and be sure she gets only the "sugar-free", which she accepts OK. I really don't want her to end up on insulin. For those LO's who insist on ice cream every night and are diabetic, there is sugar free ice cream. If there is no diabetes, then go for it.
As dieting has been mentioned here as one of thge areas of giving them free rein, so to speak, I've for another peril in the directions of professionals who don't "get it". I've been fighting the results of my DH being encouraged to diet, soely to lose weight. He's not diabetic, doesn't have highj BP, etc. He used to be 6' and weighed 250-260. He was also VERY muscular. I researched her tool for her statistics justifying her actions. She's going by the BMI index. Problem is, it doesn't work well for children, seniors, atheletes, and doesn't take into account body frame size. Drs. were shocked both times when ordering knee supports while treating injuries. XL was too small for him.
Now I'm still fighting his starvation diet method for losing weight, because that's how he thinks he has to do it.
Even the Hospice nurse I talked to said: It is inappropriate to promote dieting solely for weight loss in the patient with Dementia. A healthy diet with controls for conditions like diabetes is okay. Otherwise let them eat what they like.
On a side note, she also commented to me that him losing weight would make it easier for caregivers to handle him when that becmes needed.
Guitar Guy--is it possible for you to change the timing of the bathing? My husband isn't the best patient either, but I have learned that if we wait until about 4 or 5 p.m. to do things like toothbrushing and face washing, he is much more cooperative. (Yes, it probably isn't the best thing for his teeth, but it works.) I know that her bathing schedule may be driven by the incontinence, but I feel that if I would try to bathe my husband in the a.m. it would be a big flop. Again, late afternoon/early evening works better. It sounds like if you bathe just after giving pills, perhaps they aren't completely in her system yet when you are trying to bathe her? Maybe you can delay the bath and to ensure the meds have kicked in? If I recall, Bathing Without a Battle also suggested only doing a portion of the body each time, if the patient is combative. I feel for you, I know it's not easy.
Emily, I agree with you. Now is not the time to start dieting and watching what they eat. I admit that if it is going to put them in a coma like Marsh's wife you have to be careful but my husband has had diabetes for over 20 years and has never really followed the diet. I let him eat whatever he wants and keep an eye on his blood sugar. He sneaks outside to sweep even in the winter without a coat or hat. I just watch that he's not out there too long but am not going to fight with him to get a coat on.
I am very concerned about skin issues. If she has a BM, I want to make sure she is cleaned up as soon as possible.
Getting her bathed in the morning usually happens after she has taken her meds. Usually 1 to 2 hours later. Another battle is of course, getting her to take her meds when she says she doesn't take meds.
We have tried bathing her at different times of the day, making it as easy as I possibly can, but so far, I haven't hit on the best way for her yet, and it really bothers me.
I will keep trying, until I find the best solution(s). What does help, a bit, is asking her for permission to help her, and letting her help by handing her a wash cloth.
Guitar Guy - I don't know if this would help but you might want to try a colorful "scrungy" made from net. One for her and one for you. I love those better than washcloths - except for face. Perhaps some colorful bottles of liquid bath/shower soap and encourage her to sniff the scents. Distraction can be a help sometimes. Bath and Body Works have some great scented soap in tubes and matching lotions. I like to pour our a handful of their lotion and dab it all over then massage in. Evening bathing also worked better here for dh. However, he loved showers and insisted on one a day so I was lucky. Oh, he did not want the shower spray on his face so perhaps that is causing an issue. Good Luck.
Yes we have the scrungy things. They are really good, except for the face of course. Good idea. I did get her a whole basket of lotions, towels, and such as a gift for Christmas. (Also got her a bottle of Chanel No. 5. She loves that!!) Haven't tried the basket goodies yet so maybe I should.
You and Marylin may be on to something about the evening bathing. Now that I think about it, she always took a shower at night. I can try to make that a routine again.
Sometimes when you are in the thick of it, you can't think straight enough to clearly come up with a plan. Thanks guys! I mean gals! :>)
I started crushing meds & putting them in pudding, yogurt or applesauce when my husband refused to take them any longer. Also, learned that showering & brushing teeth everyday didn't make the world end....really hard though for a Type A person, like me.
Kadee-sounds like you could have written the article. Caregivers like you have to make so many life style changes. It is difficult not to lose yourself in the mix.
Guitar Guy--I don't know much about them, but I know there are "barrier creams" that can be used to avoid skin irritation due to bowel movements. If you are concerned about skin issues, perhaps the use of the cream would buy you more time before bathing is absolutely necessary. (Of course, appllication of the cream itself might present another problem!)
Is there any type of music she particularly likes? Would playing some soft, soothing music during bathing make it more pleasant? I must say, if she likes Chanel No. 5, she has good taste. Another idea might be to buy some of those LED candles (no flame, but it simulates a real candle) and dim the lights in the bathroom, make it more like a "spa" experience. Lighting lots of candles and having soft music going when bathing with nicely fragranced products makes it a much more pleasant activity.
Yes she LOVES music. I have a couple of IPODS (with speakers) around the house, with all her favorite music loaded. That gets her in a nice mood just before we wash up. Doesn't help distract her though while we are washing up. Maybe I should turn it up louder and have her sing along.
As far as the bathroom, she has been afraid to go in there. Afraid to sit on the seat even though I am right there. She thinks she's going to fall. However, this past week, for reasons I cannot understand, she has said a few times " I need to use the bathroom". I go in with her, she sits down without too much of a problem while I help her, and viola...! And I have to say, she feels SO much better after that she will sit in her chair and actually snooze a bit.
GuitarGuy, could it possibly be that she thinks your reflection and her inflection in the mirror are strangers to her? My DH is convinced that there is a man in the mirror. He talks to him and sometimes is very angry about him. He doesn't like me to take a shower because of him. At times he doesn't want to brush his teeth or shave because "the man" is giving him some back talk.
Bama, isn't it funny about the man in the mirror. My husband usually jokes with him and sometimes, I think he talks to him about me! He usually shrugs his shoulders and smiles at him, as if to say "this woman is nuts, I don't know what she's saying"! If I find him talking to his reflection (in a very soft voice) he will never tell me what they are talking about. So who is the paranoid one around here?
We are nowhere near the stage GuitarGuy's wife is, but my husband won't bathe as often as he should. But, I do find if I suggest he take a bath, or shower, in late afternoon or evening, he is more compliant. Bama, your idea of the "scrungy" might work for my husband; I think he might like it since it gets "sudsy" so quickly.
GuitarGuy, I just thought of something else. If she does not like the bathroom and you are doing a sponge bath...try the kitchen. That's where I bathed the babies a long time ago. You have warm running water, a sink and plenty of counter space. Bev, Imohr gets credit for the scrungy but I do use them.
I did try the kitchen for a time. And it seemed to work, and then it didn't. Right now, we wash up in the bedroom or out in the living room. It depends on her mood. She is very concerned about her privacy and her seeming awareness that she is unable to do things for herself anymore. That is the one thing that makes her more upset than anything else. She always lived her life, thankful that she had survived Polio as a child, and was so active in her day to day life, that she would wear me out many times over the years.
This is the worst thing that could have ever happened to her. Cancer would have been easier. For her. She will not go quietly into that good night.
So as much as allowing them to do what they want, which under certain circumstances is wise, and it does in fact reduce the aggression, there are things that have to be done for their own safety. Earlier this year, on my birthday, she jumped out of the car. Now I could have let her just do what she wanted to do, but that would have put her life in peril.
Since August, we have been in the hospital 5 times dealing with getting her meds regulated, and dealing with episodes of syncope, her almost out of control behaviors and with blood clots in her legs and a PE. So, we have both been through the ringer. Her giving me a hard time about getting changed and washed up is a piece of cake compared to what we have both had to deal with in the past several months. I'd just like to make it as comfortable for her as possible. She deserves that more than I can say, and I have to do my best to make sure I'm doing everything I can do.
Her shadowing me has increased in proportion to her awareness of her condition. I know in my heart, that she is terrified. So am I, but unfortunately I have to be the responsible adult. A job that I am supremely unqualified for.
I know this sounds very silly but the distraction I use when my husband is yelling at the CNA for bathing him: I blow in his face. Puff puff puff. He stops and blows back. I hold his hands down on the walker so his backside can be cleaned up... and puff puff puff. Try it!
Desitin cream, applied to the backside, makes it easier to clean them up.