recent new signs of progression

DrinaJGB

DH has been diagnosed with mixed dementia this past year after a brain injury in 2010. He was put on aricept for a few months, but started to lose too much weight and was taken off.

Now he is wetting the bed nightly when he was getting himself up and going to pee at night previously. He has also become somewhat of a slob. He used to be very neat, but now he gets food all over himself and when he makes his snacks during the day he gets stuff all over the counter (like peanut butter, humus, honey)--and on the floor, and merely walks away from it like it's not a problem.

I was doing laundry twice a week now it is every day---starting at 6 am when he has wet sheets (yes we have a pad and a mattress protector)--pajamas, tee shirt, etc. If I don't catch it he will keep wearing the soaking wet pull ups, and merely go into the bathroom and change his pad. It's like he doesn't realize his underwear, pajamas and tee-shirt are soaked.

I fear this a progression of the disease, and a very hard rain is about to fall.

sandwichone123

DrinaJGB, I am sorry to hear about this. Your story is one I dread here. My dh is messier and messier, but still able to do self-care. I do not have time to do laundry every day or change the sheets, etc. I also may or may not have the patience to manage it.

Buggsroo

Drina, 

I get you. I am always cleaning up after my husband. His hygiene is dodgy, he who was so clean before. He throws his soiled depends in the laundry hamper, I fish them out while trying not to gag. He drools, he gets food all over himself, I find myself either on poo patrol or laundry duty daily. 

It is discouraging and very sad.

Daughter of a Marine

Drina, I'm so sorry to hear about this and I can strongly relate to your fear of decline. My DH has changed in countless ways since being diagnosed initially with mild dementia, but has now progressed to the next stage.  He had surgery in May and was under anesthesia for 5 hours and his memory and confusion has worsened since then - thank God for Seroquel!  I have also noticed that he is no longer a fan of showering, changing to clean clothes, brushing his teeth, using deodorant, etc.  It's a constant struggle and it breaks my heart because this is not who he used to be. I try not to think too much about what lies ahead - God bless you all who can relate to this!

DrinaJGB

Thank you everyone for your support and for hearing my concerns.

  You are angels all. It feels good knowing I am not alone in this confusing, heartbreaking, and ever-changing journey.

Carry on,

DJ

Lynne D

DJ, when last evaluated my HWD was at 5.5. He is just like a petulant, messy toddler. To make things worse, he throws temper tantrums when I clean up after him, taking it as an insult. 

I do not have any advice or words of encourage,

Me too for you, just my empathy. 

ButterflyWings

Oh my goodness yes to all this. So sad and also exhausting. 

Laundry and food area plus mustache/beard cleanup here adds several hours to the workload. If and when the agency or VA can find a real live person to fill the HHA hours we have been approved for, I hope they will do laundry and the light personal space clean-up for DH. Is that something you all can use? 

DH’s messy eating is new-ish, getting worse, (he keeps eating, oblivious to the food dribbling from the side of his mouth like he sprung a leak). It’s kind of gross but mainly sad. As you said, he too was always clean, neat, and so independent. Wants to still be independent so he only tolerates just so much mouth or chin wiping from me. I talk a blue streak distracting him while smiling to distract him & try to do it quickly, 

Same strategy for his sponge baths which is all the physical hygiene help he will accept. Which was an attitude adjustment for me but showers or baths are off the table here. Several old threads from me, on that learning curve. He can’t and/or won’t, and made it VERY clear. We have a CNA that visits 1-2 hours a week and he’s politely but firmly told them no, consistently as well. Even through 6 months of progression. And they agreed, “No means No”. We go through a lot of the large size adult disposable washcloths. So far, so good. 

For now, I’ve had luck with cutting an underpad in half for his ‘bib/lap/chest’ covering since he likes to recline while eating (I know. Don’t ask. That’s another post for another day) at least I can throw it away after using it to wipe up some of the spills. Less laundry. 

Drina, You poor thing with the bedding though!!! We traded the Depends brand in for more absorbent higher quality incontinence underwear a while back. I use both the tabbed kind and a brief type over that at all times, plus layer the bed (another task I’d like to delegate to an aide)

Keep breathing, everyone. 

DrinaJGB

The overnight underwear is high quality from Dry Direct and made in Italy, but Ed suggested I also try the Booster pads made for those particular underwear.The pads I have are just from the grocery store.I will try anything. I feel like I am running a laundry business now. It's exhausting.

We have actually been dealing with the whole incontinence issue for 12 years now since his brain injury. Things got better along the way through the years, and it was finally manageable with fewer accidents. Now all of the sudden we have switched gears and back years ago where the wet bedding was a daily thing.

Thank you everyone for your priceless advice and much needed support!

Senita

Aricept has been a life saver for us. Before my husband went on it he was having severe hallucinations, total incontinence, inability to tell night from day, etc. Aricept reversed all of this and it got even better when the dose was increased to 10 mg. He may have lost some weight and gets frequent diarrhea, but the benefits far outweigh any drawbacks for him. He began sleeping all night and has much less incontinence. He can't always make it to the bathroom in time, but the situation is better. Now he is dozing on the sofa in the morning, sleeping two hours in bed in the afternoon, and he goes to bed for the night about 7:30. He sleeps on a rubber sheet which has cut down on laundry. He does not want to shower any more and that is a problem.

Ed1937

DrinaJGB wrote:

The pads I have are just from the grocery store.

Hello again. If you are using the pads along with incontinence underwear, I don't think they will work very well if they are waterproof on one side. Those should be used with regular panties because they are made to keep the underwear (and clothing) from becoming wet. So I view those as only for light incontinence. The pads to be used with incontinence underwear should be absorbent on both sides. At least that's my take on it. If anyone disagrees with my thinking, please say so. I'm not always right, you know.

DrinaJGB

Hi Ed---Yes, now that you have told me about the better pads I am going to order some for him. It does make sense that they would work better with the overnight underwear. Thanks again

JulieB46

I wanted to ask about the same thing. My DH has declined to incontinent in one week!  I bought pads for his leaking when he couldn’t make it to the toilet in time. Then I got him briefs for the night and he started using them 5 days ago(with arguments). Now he has gotten out of bed, pulled down the briefs, and I have woken to the sound of urinating on the carpet by the side of our bed!  This has happened 3 of the last 4 nights.    He hasn’t wet the bed, but I can’t have this either!   I also, think he is declining cognitively in the last week or so and I now have to help him dress and shower.

DrinaJGB

Julie--what a pain having him go on the carpet! At least I can wash the sheets, etc. daily, but carpeting is impossible to get clean.

JulieB46

I know!  I have been putting pads down each night. I also  set alarms every 2 hour at night to get him to the bathroom. I’m at urgent care right now to rule out a UTI

Jewelsrr

Daughter, thanks for confirming what I suspect. My DH had a surgery a year ago and I keep saying that I think the decline has become more rapid since as well. Hygiene and the lack of awareness of mess are my frustration as well. Pretty sure he is not brushing his teeth everyday. Definitely not showered unless I remind him but thankfully only went one week recently not changing clothing. He can still help around the house but doesn’t do much unless I ask him to but at least he can.  

This is not fair at all.