How to approach the loss of dignity

RobertsBrown

     I just need a helping hand over this coming hurdle.  My wife can't do basic stuff, including eating a sandwich (takes them apart, eats layer at a time), or filling her own coffee cup.

In the bathroom she's on her own, and the results are getting worse.  Used toilet paper is going in the trash, sometimes joined by soiled underwear.  All underwear needs skid mark work when washed.  And, of course, she is going through the 'I don't want a shower' phase.

I am super shy about bringing any of this up. I just can't see any way this conversation ends well.

How did you handle the change when the loss of basic dignity had to be confronted?

Crushed

FWIW I treated her like a princess and asked her very kindly to humor me since I had a bad day.  However we had taken showers together every day for 40 years, I had always cooked and served her meals and done her laundry.   I would ask her to wear a "special pair" of earrings and I would put them in.   

She was a physician /computer genius and it came hard when she could no longer use her computer without help.  I bought matching machines and would sit next to her doing my own work.  I would note her problems and  reconfigure the machine  (e.g. her machine had no password)

I did all purchasing of any kind. She would tell me what she wanted I bought it.   A few things were silly but not expensive.  

I did not worry about how she ate.  I just altered the food.

Joe C.

RB, You are describing the phase my DW entered about 3 years ago. As for sandwiches the only ones I give her anymore are grilled cheese which she will still eat like a sandwich since it does not easily come apart.

For the bathroom issues I slowly inserted myself into the bathroom starting days she was having a particularly difficult day. Initially I would just guide her through the wiping procedure but slowly I took over that responsibility. Now I have to take her into the bathroom as she no longer remembers she needs to pull down her pants before sitting.

Showering is still a struggle, for a longtime she was willing to go into the shower with me but these days she even resist that approach.

RanchersWife

Keep your face neutral when helping her in the bathroom. My LO still searches my face for signs that things are ok...or not. I remember the fist time I had a baby and how strange it was to be helped and monitored in the bathroom. The nurse’s matter of fact attitude showed it wasn’t a big deal and I accepted that in my post birth daze. The same approach might help you.

Ed1937

In my opinion, you shouldn't worry about her taking the sandwiches apart. My wife eats differently than she did, but I just let her do it. If she reaches, with her fingers, into a salad bowl, that has dressing on the salad, so be it. If she doesn't want to comb her hair today, that's ok. If she doesn't want to take a shower when she has feces on her body, that's a different story. In other words, let the things go unless they are really important. If the actions don't hurt anything, let it go. That will make your job easier. Don't look for trouble. It will find you. 

The privacy issue in the bathroom is one that I'm facing now. She usually needs help, but does not want me in there. Sometimes I try to give her privacy, but sometimes I'm sorry I did that.

Concerning the shower: I have not had much luck getting her in the shower without an argument. Avoid arguments whenever possible. But one of our daughters is able to talk her mother into just about anything. So when she refuses things that need to be done, I call the daughter. Then she talks her mother into doing whatever it is that needs to be done. Sometimes it's easier for someone else to get them to do things they resisted. Maybe a family member, a close friend, etc. Keep posting, and you will get different options from others who have been, or are there now.

Cynbar

I was able to talk my DH into wearing disposable briefs by buying the Depends that look like real underwear. The men's version is olive green but they make some pretty, decorated ones in women's styles. I replaced the regular underwear in his drawer with the new ones and told him it would save on laundry. He bought it. He had always said he would never wear "diapers", but he quickly adapted to these. It's been a big time saver for us.

LadyTexan

My principles for keeping DH at home are safety, independence, and dignity. Safety is my priority and it trumps independence. But I try to maintain DH's dignity as best as I can. Honestly, independence has fallen out of the equation.

In our home, DH's disease progressed and his independence declined in increments. For example, 

• as DH was spilling more coffee and sugar in the kitchen, I got ahead of him and just started serving him his coffee, I reminded him that coffee tastes better when someone else makes it for you. In fact, I was being selfish because I was tired of cleaning up a sticky, messy kitchen and I worried he might burn himself.
• DH usually eats with his fingers now and creates a terrible mess. I don't flinch at the mess, or how he takes the sandwiches apart (as you described layer by layer). I am fortunate if I can get him to wash his hands afterward. If he does (wash his hands) I celebrate that win and clean up thee mess without comment, With a cheerful face.
• The bathroom has been a hit or miss Earlier on I was able to get him to keep the door open. Then I started to follow him into the bathroom. He was very resistant to my presence and my assistance. When the post hospital discharge home health therapists were here, they emphasized to DH that I needed to be in the water closet for his safety. They repeated this on multiple visits. It has been a process to gain his acceptance. It did not happen over night. Sometimes he still protests. I have learned the messy way, that when he protests he really needs me with him more than ever. Please keep a cheerful or neutral face. It really makes a difference.
• We had a couple of bad episodes before DH would let me assist in the shower.
  • the EMTs had to get him out of the bathtub one day when he was adamant about bathing solo.
  • DH was bruising his shins getting out of the tub.
  • the home health therapists told DH I needed to be with him for his safety.
  • Now we follow best practices for showering, and it is not as miserable.
  • For reference I consider showering best practices: safe environment, warm room, fluffy towels at the ready and a VERY quick and efficient soap up and rinse off process. Please keep a cheerful face.

harshedbuzz

It's likely your DW has anosognosia. This is the inability of a PWD to not recognize that they have had a cognitive shift and resulting loss of ability to function independently. While not universal, it eventually happens that most PWD don't realize all the things they are no longer capable of doing as, in their mind, they just fine. That's their reality. Pointing out otherwise will feel insulting to them. To that end, skip any conversation about stepping in to help as it will likely only anger or hurt her.

Instead, jolly her along and insert yourself into her care in as matter-of-fact and this is totally normal manner possible. 

Around the bathing, sometimes a PWD believes they've showered for the day. Sometimes it helps to do this first thing if that was her usual MO before dementia before she's moved onto the rest of the day. Sometimes it helps to take the let me spoil you with an "at-home spa day". And sometimes, bringing in a HHA can get the job done where you don't succeed. 

HB

Beachfan

My DH can do virtually nothing for himself or by himself.  We are 11 years past initial diagnosis, so the progression has been slow, but steady.  Awhile back, as Lady Texan emphasized, I tossed out the “independence” aspect.  Little by little by little, I just started doing everything for DH.  I couldn’t stand the frustration on his part so independence went out the window.  I sit with him during each meal providing physical assistance and feeding him the last few bites.  He has not used a toilet independently for at least 6-7 years.  He gets a shower, shampoo, etc. every other evening without fail.  I have a routine that does not vary and I maintain 24/7/365 hawk eye vigilance.  It’s exhausting, annoying at times, but having approached his care in this manner years ago has eased him into accepting  my help.  How much longer can I/will I do it- - I don’t know, but for now, it’s working.  Good luck; it’s a long and winding road…..

RobertsBrown

As always, you people are amazing and helpful.

Since we are all in the same boat, I use ability markers as a reference only.  Can't eat a sandwich tells you all where my gal is.  It seems better than trying to fit her into a stage.

The bathroom thing is so very hard for me.  We are farm people, and we have had many animals in our lives. The question of when to put an animal down was finally boiled down to dignity.  When they could not get up to go out and do their business, that was it.  Diana actually called it.  End of dignity defined end of life.

I just didn't really see this coming, or not quite like this.  I don't know what I was expecting.  today was a major bathroom cleanup, and we didn't talk about it because we can't talk about anything anymore.  As many of you know, it's not what we say, but how we say it, and even then it's hard to set the right tone. This bathroom thing has a lot of potential landmines.  I just did the job like I had been doing it for 20 years, matter of fact and cheerful.  This is so darn* hard. I sure hope I can handle it.  Right now it feels like it's impossible.  I suppose we all come to this place.

Insert cuss words here [          ]

RanchersWife

Bathroom issues are initially traumatic. They are also a way to give your wife dignity. Keeping her clean and healthy is the ultimate goal. You will be the one giving her dignity.

Stuck in the middle

RobertsBrown wrote:

I just did the job like I had been doing it for 20 years, matter of fact and cheerful.   

Sounds like you have the right approach.  That's how I do it.

Stuck in the middle

Black and navy underwear saves a lot of pretreating.  The skid marks are still there, but you can't see them.

Stuck in the middle

I do more leading than directing.  We (not you) need to fasten our seatbelts.  Let's take our bedtime medicines.  We need to take a shower this evening.  Thank you for rubbing oil on my back where I can't reach, let me put some on you.  

You can be pretty undignified as long as you treat it as normal.  Sex isn't real dignified either, but most young married couples do it.

aod326

I hear the sadness in your words. This whole thing really sucks. DH's progress was pretty fast and the majority of the time he needed help in the bathroom was during the five months he was in MC. Prior to going in, he'd been urine incontinent and I'd persuaded him to wear Depends "just in case", and had to clean up pee in the bath, closet, spare room etc., but nothing major. Ever since I'd known him he needed to pee all the time, so I was able to make a joke about wearing the Depends. When he came home from MC, on hospice, it was the changing and dignity that got to me the most though. It wasn't the yuck factor of changing him - I didn't much care about that - it was the fact that he didn't even seem bothered that it was happening. That made me so sad. Obviously I'm not saying I would have wanted him to feel bad about, because he couldn't help it - but the fact that he didn't, just showed me how far he'd progressed.

One thing I insisted on, though, with the carer, hospice nurse, anyone, was not to use the word diaper; worse, when one carer always referred to them as Pampers. To me, diaper = baby, and he wasn't a baby. On one of his hospital stays, the nurse called them "adult underwear" and to me that seemed much more dignified.

And yes - consider cuss words inserted!

RobertsBrown

Hey Rancherswife.  That was very helpful.  The idea that the caregiver is the person giving them back their dignity...that is....well, it's insightful and brilliant.

Jeff86

I suppose I have been lucky in that my DW has readily accepted help in the bathroom, as she has more generally.

While I am grateful for a battle averted, I feel much as aod326 does.  Pre-AD, my DW would have regarded my intrusion into the bathroom as an affront to her dignity and privacy.  Flash forward to today.  She doesn’t know that she should go to the bathroom (sometimes), she doesn’t know what to do when she’s there (sometimes), and she doesn’t know how to wash her hands.  She doesn’t know that her Depend needs changing.

This was a big loss.

DrinaJGB

I recall reading somewhere that the incontinence issue and the wandering issue were typically the deal breaker when it came to placement. Very hard for the caregiver. We have dealt with incontinence for over a decade, but it has slowly improved over time. Sometimes it becomes overwhelming and one longs for those days when you never accompanied your LO into the bathroom, and you both had dignity.

RobertsBrown

Ok...whew.

Today was the first day of bathroom assistance. It went well.  Kinda gross, but we managed and the reason I am posting this is that this board made the difference

I didn't expect this to happen this fast.  My post that started this was naive and I didn't think I would be at this stage for a long time.  It happened VERY fast.  Sometimes we feel like we go for months with little change in her abilities, and then we have a day where big losses happen in a heartbeat.

The discussion between the start of this thread and today made all the difference in how I handled it, and how it was received.  The mental preparation was key.

I thank you all.

Newbernian

Thank you all for very helpful insights.  Went through ALZ with my Father and FIL.  They both passed from other complications before they reached this stage of the disease.  Actually, I felt pretty knowledgeable about the disease.  Wrong!  You have opened my eyes to the reality that will probably be in my future.  My DH was diagnosed by PCP 2 years ago.  I had known the obvious 6 months prior but delayed getting diagnosis which in fact was a waste.  PCP not at all helpful.  Refused to prescribe any drugs because they didn't work.  I refused to settle and tried to find a neurologist for help.  Had to get referral.  PCP wouldn't give referral until he saw my husband.  Grudgingly gave RX but titrated too rapidly and DH had adverse reactions but did have positive results with memory and cognition.  He has an appt. in a month with a neurologist which I had to push to get.  Although, previously feeling hopeful, had a reality check on the thread a few days ago about responses from Doctors.  Because of Covid no support groups in our area.  This forum has been my lifeline and will be for a long time.  DH is 77 and only med he is on is for ALZ.  He still is able to work in small town cutting yards and cleaning up leaves and gutters.  Extremely agile and healthy so I know his only complication will be ALZ.  Today he is going to the dentist.  Has not had an appt. in about 7 years.  No tooth problems but after reading thread about needing a dentist for more advanced cases of ALZ, I realized I needed to stay ahead of this. I explained my reasoning to DH and he agreed.  Thanks for your tips.  They are wise, useful and appreciated.