I've been feeling especially low lately, especially since finding out DH won't be able to participate in the phase III drug trial (I think it's the same one Joan's DH is participating in - it has promising results from what they say.) because of his involvement in the phase II trial he's in now (it was put on hold, now it's been taken off hold.) I think he has probably receiving placebo since the 2 injections he received already made no difference. I thought we would see some small improvement, but I've only seen decline. I can't ask them to "reveal" that he's on placebo because on the off chance he's been getting the real thing, he'd then be ineligible for this trial and the new one. arrrrrgh!
Our two older boys are staying with my sisters during the week and I miss them even though it's easier this way. They're on summer vacation and I have to work full time so I have to send them there. I feel so guilty even though they have a great time swimming and going places with their aunts. It feels like I'm not being their mother, you know? I keep thinking I should be home with them, and the youngest, who's in daycare and growing up so fast, but I can't be. And now I'm arguing with my sister. I feel burnt out this week.
Anyways, I wanted to ask if it might be time for DH to start wearing adult diapers. He's had several "accidents" with BM's in the last few weeks. It doesn't happen all the time, but it seems to be getting to be a regular thing now. I can't stand the idea of his having to wear diapers. Our youngest is still in them for God's sake! But I also dread coming home and finding out he's had a mess, like yesterday. (He's in a day program but gets home a couple of hours before me.) I don't know. I was wondering what you all think.
To be brutally honest, Kelly, I started my DH out in depends way earlier than he really needed them. i knew he would have to be in them soon enough and sure enough that time came. it was no issue at all in my case, i used them and put his regular underwear over them so he still had a sense of wearing the same thing. i dont see any issue at all doing this and by gosh its just plain easier on us as caregivers to keep the place clean. i think the stigma of 'diapers' is in our mind and even though we know rationally that adults should be able to go to the bathroom there are diseases that impede this, and there are many besides AD. i think its alot more humiliating ( if we will use that word here in this discussion)for them to have us have to clean up and be upset about the mess they can cause and have no control. so in my own personal opinion, i dont have any issues at all about getting the transition started as soon as feasible. i relate wearing diapers like a woman using a pad during her monthly cycle, for convenience sake. try the reg underwear over it and see how it works -i was shocked my DH never said a word and hes still in them double now, 7yrs later. divvi
Astronauts wear "diapers" -- space diapers, called Maximum Absorbency Garments, or MAGs. So do others who may not have ready access to bathroom facilities -- truckers, for instance. They're not just for babies. Maybe it would help to think of them that way.
We haven't gotten to the incontinence stage yet, others are more qualified to give you advice. But until they come along ... my immediate reaction is that it is much more dignified to wear MAGs than to have smelly accidents.
(divvi snuck in there while I was googling NASA... :-)
OK Sunshyne, the scientist in you has found for once a profound answer- MAGS/diapers/messes/'outer space' surely the correlation is significient with AD:)....divvi hahah..couldnt resist this one.
Question for you more experienced caregivers - My wife has been in Depends for most of the past year. She had no objection to using them. I did it because of occasional "accidents" involving urine and finding her under panties in the bathroom having been washed. Since then there have been no problems during the day (although she has occasionally wet the Depends), but she is having more "accidents" at night, and even with the Depends is wetting the bed. It happened twice in the past 3 nights. This has occured even though I am getting her up to "pee" every time I get up. How can I prevent the Depends from leaking at night?
Go to the top of the page and click "search". Type in "incontinence" in the topic section, and click. There are a many suggestions under that topic. Particularly check on page 2, a post by briegull - quite a lot of ideas.
marsh i got those plastic panties that dont have snaps that go over the depends for wear to stop leaks. you could just use at nite. they are kinda hot during the day if its warm weather. they work well and have smaller legs so they fit well. you can get at medical supplie store or online. divvi
I'm in Maine on a 56k baud modem so forgive if I abbreviate stuff. Our son came to take care of DH while I'm up here for the week (very productive meetings with my land trust board, gorgeous weather, and boy did I need it!) Son told me about the astronaut connection to Depends, which he had looked up when I had told him he would need to attend to Depends.
There do exist something called "boosts" which Depends makes, which don't have an inside plastic liner, so they absorb more. Also, marsh, she might do better with a smaller size of Depends, so it doesn't come through. Finally, do what Sunshyne? or ?? has done - one smaller size inside, then a larger size over them.
p.s. Son reports all is well, confabulation going apace, and no time orientation, but he's hanging in there and I'm glad I've left DH in good hands. There was an episode though where dear son managed to leave the outside door open and was worried that our Chimi-cat had escaped, but it was a false alarm!)
Comment Author Alice Comment Time 50 minutes ago edit delete
How do you know when it is time for depends? And how do you approach the idea with your LO? Someone also mentioned where to order some. I am thinking only needed when we go out where it is impossible to go in with him ( such as at my son's Pop Warner football games). I sure don't want to freak out any little boys or girls! and some of the places are ratty anyway. He is at the point that I must go with him and give him direction and it is hard almost anywhere we go except the few places that have family bathrooms and that is not often a readily available option. We are having issues with frequency also. Thanks, Alice
The time for Depends it the day before you started. One night of having urine soak through to the mattress is one night too many. That seemed like a very low day when it happened. But frankly, I don't know how you know when that day/night will come. I feel thankful that my DH has been quite willing.
Well, my husband has only had a few accidents, and not in bed as yet. I am going to get a plastic cover for the mattress this weekend after picturing Fran's response above! <grin>
Also, somewhere someone commented about being afraid of not finding a restroom in public for both spouses, and not wanting to take the spouse into the women's or the men's - almost everywhere we go now has a "family" restroom besides the women's and the men's, and it is big enough for a wheelchair or baby stroller plus another couple of people - and has a baby changing station as well, for those who need it. Airports have these and some of the nicer restaurants and service stations. The new minor league baseball field we took my husband to for a baseball game had one, which was nice to know! If you know ahead where you are going, you can call and ask them if they have a family restroom. I think we are going to see more and more of these around the nation. It will make going out much easier.
Alice, is he okay at night? You can start there if you're getting him up to go.. use the argument that it's convenient for HIM not to have to worry about it. Ordering stuff over the internet is easy to do but you have shipping, and until you know what you want you're better off getting a small supply at the local drugstore. I did not find that the "male guard" type things worked well; they were hard to get in the right place and hard for him to readjust after he'd gone. At least the pull-up ones (NOT the kind with tabs) are easy to get on and to pull down or work around.
I have no shame. Went to the men's room. There was a guy coming out. I told him the situation and would he stop anyone else from coming in for a few minutes. He was happy to oblige and that was the way I did that.
One time several years ago, the same thing happened at a women's room. Some fellow had to take his DW in and he asked someone to have the ladies wait unti his wife was finished.
Mawzy, I've run into the situation where a man needs to help his wife. All the women in line (and there's ALWAYS a line) are very understanding. Sometimes they offer to help the wife instead, I've done that once.
One time when I was over in London, a man came into a women's restroom with a woman, and I don't think she even needed help -- I think he was just keeping an eye on her. I was a little startled, but nobody else batted an eye.
My DH sleeps in a leather recliner, which would be better than fabric but I haven't had to face the incontinence issue yet. I put waterproof mattress covers on any bed he might use a year ago. First sign I see of incontanence the pull-ups will go on. Right now he uses a large ladies panty liner for excuse? (wet farts). My Mother only used the pull-ups for security and occasional night accident during her last 3 months. I hope I can be so lucky with DH. lmohr
Family restrooms are such a great idea. My husband goes for water therapy and uses the hot tub at a wellness center for his arthritis. I wonder how long he's going to be able to change clothes and put on his swim trunks by himself. I hope he doesn't have to quit because it seems to really help but they don't have a family changing room.
We use "regular" men's briefs during the day with TENA brand ULTIMATE inserts...they absorb ALOT, and so when we go OUT, they are on him all the time. They are "peel & stick" type, like maxi-pads for women. We try to GO before we leave the house, and then are not gone too long inbetween trips...There are NOT family type restrooms in all that many facilities. When traveling, FYI, DELTA airlines DO NOT have "FAMILY" restrooms in their airport terminals in DALLAS/FORT WORTH or DAYTONA BEACH...we were @ both & NO GO on the FAMILY restrooms, altho American Airlines DOES have them @ DFW and also @ Ft.Lauderdale, if you need to know.
At night, we use Depends, Super Absorbancy, with the TENA Inserts in them as well. I also have 36x36 washable pads on the bed & this has been a godsend!! Before these, I was doing sheets & mattress pad laundry every day!! Now it's just so easy to wash the pads! The depends do leak, no doubt about it. When we have a "good night" and he makes it to the restroom, there is a good 8-12 ounces of liquid when he goes...we use a hand-held urinal now because he can no longer understand the steps to "hold your pee pee"...I have tried so so many things...these tips are what works best for me/us, and I can tell you even with these, we have had accidents. I carry extra clothes, briefs, pads, and disposable washcloths with me when we are going on "outings", i.e. Dr. appts that may take longer than 2-3 hours...and we also limit liquid intake when we are out & about. It gets easier!! At first I was a basket case, but it does get easier ~ Practice, practice, practice ~ And Prayers!!! Always a MUST!!
When my Mother was here I used a draw sheet. like the hospitals. and used chucks under them and usually when she had a leakage I just had to change the drawsheet and discarded the chuck.
Starling A draw sheet. You take a flat sheet, any size and fold it in half and put it over your fitted sheet and tuck it under the mattress on each side. You can pull it from under the sizes and one person on each side slide the patient up in bed. I put a couple chucks (you buy them wherever you buy depends and they come in different sizes.) under the draw sheet and if they wet and you have things positioned right you don't have to change the fitted sheet. Just remove the draw sheet and throw away the chuck and remake the bed. They do this in hospitals. Saves a lot of work. lmohr
Starling-draw sheets are wonderful. Pulling a person with fragile skin can really cause damage to the skin and even worse the underlying tissue. With the draw sheet you can reposition the person with less wear and tear on you as well as them.
I've been on draw sheets in hospitals, and once they used one to get me from a cot to a bed because I couldn't help.
OK I now understand. Makes perfect sense. I kept wondering how you keep one of those pads under the person, but you don't. You put it under the draw sheet. Got it.
Right now should be a good time to buy super-size beach towels. They make great draw-sheets. My husband loves his, which has the NYTimes on it (really; the front page talks about the new as-yet unapproved drug Namenda, so it's a few years old!). He doesn't like the seashells so much; they go on when the other does get damp.
My wife wears Depends day and night for urine incontnence. At night I put an "underpad" between her and the sheet.
I use CVS Pharmacy disposable underpads 30x36 inches. They catch the small nighttime leakage OK. When I tuck her in each night I tell her to put her bottom right in the center of the pad. She usually lays right where I placed her all night.
This is something I've discovered in dealing with my husband & trying to "reposition" him in bed...the draw sheet doesn't work if you don't have "two" people to "pull" with...and, if you have an AD patient who is "ridgid" in his ways. My husband will invariably digg in his heels (knees bent) and elbows and if I try to move him, no way!! Just will not budge. A friend had a husb w/Lou Gerrigs disease & she has loaned me a "belt" to put around his chest and then "lift him" to move him from side to side once he's in bed. Even with that, 205 lbs is still very difficult to move around when the patient is digging in & 'dead weight'...no matter what I say or how gently I say it...still cannot understand to "relax". In the "understanding dementia" doc on the home page, I read about this and now understand how and why it occurs. They are not being difficult -- just one more aspect of the disease.
does anyone else have dead weight feet?? when i try to take off his shoes, his feet way a literal TON! he wont budge them or lift in any effort to help. i never knew a foot could weigh so much. i so understand the 'dead weight!" if i am not careful after lifting off the shoe his foot will hit the floor full force. divvi
And once you get one foot in the shorts and go to put the other foot in...the first foot is lifted out with incredible ease...leaving you to start all over again!
I know what you mean about the "dead weight feet", divvi. I try to pick up DH's legs to get them out of his adult diaper but it's nearly impossible, and helping him into the new one isn't much easier. I haven't figured it out yet.
Also, I read a lot about the urine incontinence issue, but unfortunately, I'm dealing more with bowel incontinence. I feel like I'd take the urine problem over this any day. It just started to be bad in the last couple of weeks. I'm such a wuss with this too. Today was so bad, I thought I'd throw up (sorry, I don't mean to gross anyone out.) The problem is that DH gets dropped off from his day program a couple of hours before I get home from work, so he's on his own during that time. When I came home tonight, I realized that this can't go on. I need someone to be here to clean him up during that time. I don't know anything about hiring a personal care attendant, and my income is limited, with 3 young kids.
Does anyone here employee such a person, and if so, have you been able to get help paying for this? (DH is only 54, so he doesn't qualify for medicare, and I make too much to qualify for Medicaid) I feel like I'm caught between a rock and a hard place. I need to work to pay for things like this, but that makes it more necessary to have it! (catch 22?)
Any advice is appreciated! I'm desperate at this point!
Kelly, I don't know if this would work for you, but have you talked to the people at the day program? When my husband was going to daycare I talked to several of the people who worked there for some recommendations and names of someone who might be looking for just a few hours a week to come to my house to look after my husband. I did get the name of a sister of someone there who worked as a CNA in a NH and she was happy to help me out. I paid her $15.00/hour...it is not cheap.
I can't imagine how you are dealing with all this....my heart breaks for you....
Also, is your husband receiving Social Security Disability benefits? Once he is approved for that he will be eligible for Medicare coverage after two years.
Kelly, Maybe we can help each other figure this out. I have to work full time too. I am anticipating the day when I can't leave my husband at home alone any longer. Here are a couple of ideas that I am checking: local Alzheimer's org. gave me a list of agencies that have caregivers and how much they charge, someone on this site recommended advertising for a social work college student and I called the 55+ rec. center in our area (the manager) and they gave me a couple numbers for people that do caregiving.
I am sorry for what you are going thru...so not fair...