Brought DH home from AL

loretta1835

I just brought my DH home from AL due to incontinence issues. His bedding and PJs were soaked every am and room reeked. I started going there late am and had to bag all soiled bedding and clothes and put them outside door for cleaning. His bed was soaked. I bought a hospital bed and thought that would make it easier for cleaning. AL still didn't clean, so I brought him home. He had rash on body so I've treated it like diaper rash and it's getting better. I'm determined to give him as much quality of life I can. He thanks me for giving him things to do and not feel like a burden. It's challenging and I need ideas on how to balance his care and my care.

Ed1937

Loretta, welcome to the forum. Sorry you need it. Does your husband have dementia? I think you should ask yourself why he was in AL in the first place. Did he get to the point where you could not give him the care he needed? If he has dementia, and there is a Memory Care facility that he could go to, that would likely be better for him if he is accepted as a resident. Please give us more information so the members can better help.

Quilting brings calm

Every AL is different. The one mom is in told me when they moved in almost five years ago that they didn’t handle two hour diaper changes etc. At the time, they were an all inclusive rate facility Today they have moved to a sliding fee per care level. They also seem to have a much older and frailer group of residents. They handled my step-dads’ recent nightly incontinence, changing the sheets and him, but he was on hospice at the time. I don’t know if they do that for non hospice residents or not. I agree with Ed that an MC would be better prepared to handle incontinence.

M1

Agree with the above Loretta. For whatever reason it sounds like he needs a much higher level of care. So sorry it's such a struggle.

jsps139_

Hi Loretta. That situation had to be so hard to deal with — seeing your DH in those conditions. It is heartbreaking. I did the same thing with my mother due to inadequate care she was receiving in a nursing home. (She was there 3 days). I kept her in our home (4 1/2 yrs) until 3 weeks before her passing, and she went to a great nursing home near my brother with hospice care for those 3 weeks.

It wasn’t easy, but I do not regret it. If our LO is getting good care, facilities are wonderful. but when they are not …. what do you do?

ButterflyWings

@loretta1835 I am so sorry you had this experience, but you did exactly what I would have done. I agree with all of the above. While you care for him at home, whether temporarily or for the duration of this journey, you can get help from a range of resources.

I encourage you to cal the AlzAssoc free 24/7 helpline and ask to speak with a Care Counselor. They can provide you with some immediate encouragement and also help identify home health aide options and respite resources to give you the hands on help and self-care breaks you will need.

They sent me a list of contacts and programs in my immediate area, and I have accessed some of those for my DH including free meal delivery (we got the prepared lunches for a while, and then I opted for just a 1x monthly staples and fresh produce box now that he is on pureed foods and I do all the meal prep). They also helped me identify the Age Options, Area on Aging, companion care volunteer organizations and contact numbers for all, and the local as well as State grant programs for seniors and people with disabilities and/or dementia (PWDs). It was an excellent start and you have only to call. Scroll down to the very bottom of this page for the 1-800#. In the meantime, here it is: Call Alzheimer's Association 24/7 Helpline at 800.272.3900

Good luck to you. You have a good heart and are in good company here on this forum. Good info and good people.

loretta1835

Thank you for your kind comments. I'm overwhelmed with DH vascular dementia and all that entails. He is 75 and I'm 78. I've struggled and agonized over best care for him. Staff at the AL facility think poorly of me and I guess that is why they didn't keep my DH clean and dry. I went there almost every day. The staff are young and probably don't understand the confusing and mental anguish we and our LOs go thru trying to survive. I've read many comments from you all and it is absolutely true that it is like therapy to know we aren't alone on this journey.

Thanks for your comments.

loretta1835

https://alzconnected.org/discussion/comment/200523#Comment_200523

The reason he went to AL was because I had trouble with his incontinence issues. He had 45 radiation treatments for prostate cancer which caused the incontinence. AL told me they'd clean him up and I wouldn't have to any more. I wound up going in every day to see him and have lunch with him so I saw with my own eyes that they didn't do the cleanup and bed changes. Now that he's home, his hospital bed is easy to clean up and it is easy to strip bed and put soiled PJs in washer. Now I don't have to pay the huge bill. Although I have all the work to do, I'm starting an aide to help with morning chores. I've lowered my expectations of myself since I think I'm a perfectionist. I'm having all carpet removed and laminate flooring put in to make it easier to clean up. I've become a terrible housekeeper and have hired a HK who will start when floors are done. Just writing these words makes me feel a little bit in control of situation. I'm worried about my disconnection from my DH. I don't feel like a wife, just a caregiver. Communication is difficult due to poor hearing (even with hearing aids). I have trouble finding activities that interest him. It's getting very hard for him to get in and out of car, but he loves to go anywhere I go, even if he sits in car when I do errands. My question is I've lowered expectations so low so how do I give him quality of life. He's happy to sit in his chair and watch fox news all day. Is that enough?

AnderK

Hi, expectations. How hard that is. Lowering of expectations does not equate to lowering quality of his life and how it is now. It may simply be increased acceptance of the situation, for both you and your DH. Accept that he is happy watching news. Accept that he is happy going for a ride, and take it as a gift. All easier said than done when you are up to your ankles in urine soaked bedding or sweat pants and you have forgotten to buy vinegar for the water and vinegar spray,and the zero odor products.

I am so with you about feeling the caretaker and maid. It is hard. And we are all grieving our previous lives.

You are doing the right things. Be careful for yourself. You are in my heart.

Kathy

AnderK

As an afterthought, do a search for car handle assists. It is a handle thing that you put in the car door latch for leverage getting in and out of the car, and give an added boost. Works slick when he uses it.

Kathy

Marta

Sorry if this is too obvious, but is he wearing incontinence briefs or diapers? If yes, you may need to upgrade those for better absorption. Members here know a lot about the best products.

Gandy@TN

Can someone tell me the best pull-ups or diapers to use for my DH? Every night I take him to the bathroom before I place him in bed. Every morning he and his bed are drenched with pee. Luckily We are using a hospital bed and I use several chuc pads to absorb his pee but it still is not enough😰

northernlady

https://alzconnected.org/discussion/comment/202473#Comment_202473

I buy DriDirect on-line. The delivery is fast. They are pricey, but very effective. My husband has always had problems urinating, either too much or too little. But these pull-ups hold over 3 cups of urine. https://www.parentgiving.com/collections/overnight-diapers?gad_source=1&gclid=Cj0KCQjwqdqvBhCPARIsANrmZhMvjP6IiB14JLe__WbAvI_Zy_DuxajDGzrCuaQYPEepPVkfALF8JvUaAl0kEALw_wcB&utm_medium=ppc&utm_source=google

ImMaggieMae

Gandy, we use pull-ups plus pad inside, but poke a few holes in the underside of the pad with the sticky waterproof barrier. I’ve found that booster pads don’t usually fill completely before flowing down into the pull-ups. The heavy duty pads that we use are the kind designed for women for after childbirth. They are wide and long length and absorb more completely while wicking away moisture before seeping down to the pull-ups. The number and size of the holes depends on the time. During the day, I don’t usually poke any holes and can change just the pad much of the time. I change the pads at least 8 or 9 times during the day, even though they aren’t always very wet. I do that to try to keep bacteria down that could cause UTI’s. We probably change the pull-up underneath only 3 or 4 times a day when the flow seeps around the edges of the pad. I check the pad every couple of hours. At night, with several holes poked in the underside of the pad, we usually make it through 9 or more hours with no changes with very little, if any leakage. 

The brands of pull-ups are whatever is soft, absorbent and fits the best. Everyone is different. And they aren’t necessarily the most expensive. Even the premium brands I’ve purchased don’t hold as much as advertised, hence the “booster pads”. There are many in between brands that hold just as much.

We use an extra large puppy training pad on top of a washable, soft waterproof pad that is large enough to cover half of a king size be from his shoulders to calves, or a goo part of a hospital bed. There are usually a few spots on the training pad by morning and we change that daily. The waterproof pad underneath that very rarely gets wet. I wash it weekly but not because it’s soiled. We have never had wetness on the bed sheet.

harshedbuzz

@ImMaggieMae

These booster pads are designed to be used as you describe. They don't have the moisture barrier-- just a strip of adhesive to hold them in place.

https://www.amazon.com/Large-Diaper-Booster-Inserts-Adhesive/dp/B06Y5YRRF6/ref%3Dasc_df_B06Y5YRRF6?tag=bingshoppinga-20&linkCode=df0&hvadid=80814156492534&hvnetw=o&hvqmt=e&hvbmt=be&hvdev=c&hvlocint=&hvlocphy=&hvtargid=pla-4584413735359412&psc=1

HB

FTDCaregiver1

Brought my DW back from MC last August, she's been incontinent for about 3 years now, I bought waterproof mattress covers and have Mckeeson Ultra Underpads 30x36 (big kind) and layer the bed thus, underpad on the mattress, waterproof mattress cover, another underpad, then mattress sheet and another underpad. She wears adult pull up diapers as well, works well for me thus far and most days I usually change the sheet and top pad, if it gets to the waterproof cover, change that out as well. Good you're staying on top of rashes, those can develop into nasty sores if left unattended and be a source of increased agitation. Every time I change her diapers, I use Prevail wet wipes, if a rash appears, diaper rash cream usually clears it up if you get to it early.

ImMaggieMae

https://alzconnected.org/discussion/comment/202478#Comment_202478

Thank you for the suggestion, HB. They look like they could work. Have you used them with your LO with success? 16 Oz of fluid is a good amount for overnight but I’m always suspicious of claims. My husband sleeps on his back and barely moves all night, so that helps. We’ve tried a couple different similar (pricey) pads that didn’t work at all. If you’ve had good luck with them, that’s more meaningful.

harshedbuzz

@ImMaggieMae

I didn't, but a couple folks from our local support group used them successfully.

HB