When my dad was still living at home he started having hygiene issues. I had to tell him to get back in the shower, go back in the bathroom and cleanup, whatever. He obviously didn't know he had problems and I didn't know he had ataxia and couldn't clean himself. I also didn't know he had Parkinson's, LBD or whatever. He got mad and embarassed and it was very uncomfortable for me.
Once he was hospitalized, he had become 100% incontinent overnight. He had to wear Depends. He hated it, but he couldn't get up to go into the bathroom, the nurses couldn't get him there in time, and he was most unhappy about the situation. There wasn't really anything that ever made him comfortable about it. He just had to depend on others for his total care from that point on.
When he moved to the ALF they tried putting him on a toileting schedule so he could get away from having to use the Depends, but he never did adjust. He'd say he had to go when he didn't, then he'd get back to his chair or bed and soil the Depends a minute later. Sometimes he thought he needed to be changed when he didn't and vice versa. There were no answers, which made me feel helpless and hopeless. I think all you can do, Julianne, is just accept things as they are when these declines happen. Maybe someone else has a magic answer, but I sure couldn't find one to help my dad. Lynn

Ger and Lynn,

My mother has had "stress incontinence" for several years and used to wear feminine pads in her underwear, which sufficed. Within the last few weeks, she mentioned that those pads were not quite adequate when she waits too long to get into the bathroom, so I bought her some pads that are specifically for urinary incontinence, called Poise pads. She said they helped a lot. Today is the first time I have heard of her just out-and-out voiding on the floor (I think, once again, she was trying to reach the toilet). So it may come to the point where she needs a Depends type garment. I believe she would wear them if it becomes necessary.

However, the reason why the aide was sent in was to clean her derriere, so apparently she is not cleaning herself adequately after having a bowel movement. This is a whole new arena. I think the bottom line (pardon the pun) is that she cannot maneuver well enough, for various reasons, to clean herself back there, but she does not accept that this is true.

Lynn, I guess you are right, this is just something else I have to accept. I just wish that it didn't have to be so distresssing to my mother, and to me--something that would make these transitions easier to take. Maybe it will be easier when she becomes more disabled and more dependent on her caregivers, when she can no longer pretend that she is still capable of being independent.

Thanks,

Julianne

From what the drs. and nurses told me, ataxia causes the muscles of the trunk to lose strength and the ability to coordinate, thus reaching down, back, sideways, etc. to clean or wash becomes impossible. Intensive PT & OT (13 sessions a week for 3 weeks) didn't help my dad AT ALL with the ataxia. It is what it is.
He never did accept his level of dependence, fought it all the way. It is ongoing heartbreak for the LOs. No amount of explanation, compassion, or anything helped him accept his level of ill-health and dependence. It just never got better. I hate to sound so doom and gloom, but that was the reality for us.
At least I knew that this LBDA family of CGs knew what I was going through, and that's about the only thing that helped me keep my sanity. Lynn

Julianne,
I agree that she is at a stage where she believes that she can still do it and it will become easier when she moves into another stage of the illness and just gives in to the help and I do think now would be a really good time for the pull-ups, explain to her it would save her the embarassment of another accident on the floor! Just had another thought I would hope that they aren't saying anything like look what you have done and this being the cause of her reluctance.

I know when it came to personal care it was a hugh step in my husbands care but once we did manage it he was OK!

Julianne,

My mother can't adequately wipe herself either and she won't ask for help. When I'm at the ALF (daily), I always help her onto the toilet and when she is done (No. 1 or No. 2) I'm standing there with a warm, wet washcloth to wipe from front to back. I think I say something like, "here's a nice, warm washcloth..I'm going to wipe you now". Anyway, she allows me, but maybe it is because I'm her daughter. When I'm not there I know she doesnt wipe sufficiently at all. I also give her a sponge bath at least once a week since she only allows the CG's to give her a shower once a week.

I was using wet washcloths [which is what the SNF staff use] but he complained of them being too rough so now I use baby wipes which is what we used at home. Bought a huge carton of unscented wipes at Costco. The caregivers use them now, too. They can't be flushed, though [they don't want the 'flushable' wipes flushed, either]. I know this is not a 'green' choice but I have to think about his bottom.

Thanks for all the suggestions and insights! I know deep down that this is a problem without a solution, but it is just so hard to watch her struggle. I spoke with my sister (thank God I have one sibling who is involved!) and she feels everything stems from our mother's anger at her illness and her confinement. I think she's right. So since neither of those things is going to change, we will just have to weather the storm until she either accepts more help or is beyond awareness of it.

I am not there often enough to attend to the personal hygiene myself, so the best I can do is trying to get my mother to accept help from the staff.

Julianne

[quote="mockturtle"now I use baby wipes which is what we used at home.
I also use baby wipes for dad. He can't reach to wipe either, so I just go in the bathroom when he is finished and make it as matter of fact as I can. It was difficult in the beginning, on both of us, but we got a routine going and now it is just a matter of course. Hopefully, she will adjust to her CGs doing it for her in time, and it won't be as stressful for you all. Hugs x

I used to have a recipe for home made wipes and I am looking for it, remind me if I forget to get it here ! A Lot cheaper than the wipes that you buy!

Frank can't reach around to clean himself after a BM. I like CVS brand baby wipes but if it's a sticky mess, I ordered a case of Tranquility wipes, much larger, 9x13, and even with that it seems I'm saying, wait, just one more and I can use 6-7 before I'm done. He doesn't mind my helping but I have to pay attention because he won't call for me to help and then I have a huge mess.

Thanks, Ger, I hope it will become matter of fact for my mother eventually. She has always been such a private person that this is very hard for her. (Makes me wonder how she survived four pregnancies--not much privacy there!)

It would be a lot easier if she absolutely could not manage at all, as I think then even she would recognize that she needed help. But she thinks everything is fine, even though she barely gets her hair brushed most days, and although she's about two months late for a permanent and haircut, she refuses and says her hair is fine.

I am arranging gourmet mini cupcakes and flowers to be delivered to the SNF staff next Friday as an Easter treat--and without saying as much, to thank them for putting up with my mother!! I really appreciate them, even if she doesn't.

Julianne

And they know that Julianne. They understand completely where your mother is at, that it is not really in her nature to be awkward - they would not be in the vocation they are in (and it IS a vocation IMHO) if they didn't understand. How good of you to show your appreciation,

I suppose so, Ger, but compared to how my mother used to be, she is really so difficult. Maybe when it's their profession, the staff views it differently. I find myself very frustrated by her. Anyway, a little recognition of the staff is well deserved.

Julianne

Hi Julianne, Marilyn here. I am a caregiver that has been so blessed by being able to have gone down the Alzheimer road, helping my mom care for my dad at home. I live next door so it worked out for us. He passed on in Nov.2008. Quite a few years ago I decided to go into the field of caregiving, first with an agency and later privately. The wonderful woman I take care of now was diagnosed with LBD 2 years ago. I have been with her for 20 mos. As someone who has been on both sides of this fence I think it may help you to know that most of us who care for your loved ones think of them as our loved ones also and we do know that it is this awful disease that can make them act in ways that aren't always very pretty! Every illness has its symptoms and this is just a part of an illness. Take care.

Hi Marilyn,

How thoughtful of you to let me know that. The staff at my mother's SNF is very kind and I am sure they are more accustomed to behavior like hers than I realize. It is just shocking to me because I remember her "old" self and she is so different now. It is very reassuring to hear the CG's point of view. I will remind myself that they didn't know her before!

Thank you,

Julianne