Progression…the road resumes its descent

Jeff86

In year 6 since dx, DW has been more or less stable at stage 6d, long enough to lull me into thinking things would go on like this for a seemingly indefinite period of time.  

But that’s not the way of AD, and of course I should know better.  Here’s what I’m observing:

• Weight loss.  DW has become very thin—almost gaunt.  Appetite isn’t appreciably diminished, which makes me wonder if her digestive system isn’t absorbing nutrients.  I give her two or three Ensures daily, but it hasn’t stabilized DW’s weight.
• Stairs.  It has become somewhat more challenging for DW to climb the stairs, even with assistance (always with assistance).  It sometimes seems like a balance issue, sometimes a physical strength issue.  But last night she stopped part way up the staircase, and it seemed to me that she forgot, in the moment, how to take the next step.
• Bed sores.   For some time now, DW sleeps 13-14 hours overnight.  Unlike pre-AD, when she was a side sleeper, she now sleeps on her back…and appears not to move or shift position, the entire night and morning.  So I guess bed sores are an unsurprising if incredibly unwelcome development. 

I’ve made an appointment with DW’s PCP…of course, I’ve learned to hate the doctor’s office line that begins, “the earliest appointment available is….”  And I’m managing my expectations as to what can be done to address the first two points, even as I know how important it is to address the bed sores.

Sigh.

Nerdyblond

I'm so sorry Jeff. You are doing great, but I can only imagine how difficult this is. You got the strength of love to keep on going, fer sher!

Ed1937

Jeff, I'm sorry. I wish I had words that could help, but I don't think there are any. Just remember that we're always here for you.

June45

Jeff,

I am so sorry.  I remember you mentioned a decline in another post. Declines always take us by surprise after a long plateau. You are so right about staying on top of bedsores.  Unfortunately when our LOs become bed bound it is a battle. My husband is bed bound and we have to prop him up on his side with pillows because he can't move himself. Not easy to do. You can also try wedges.

M1

I'm so sorry to hear it Jeff.  You have done an incredible job caring for her...I am amazed at what you have accomplished, truly.  Is it time for hospice?  Sounds to me like it might be, if you're at the bedsore stage.

ButterflyWings

Jeff, I am sorry for what you and your DW are going through with these new developments. We have been in 6d for a while, too. Not sure what form of decline is coming next or when, but we know it is coming. 

I know some feel hesitant to contact hospice given the connotation that it signals a finality we all understandably struggle with. However, as you know and have seen -- her progression can take many months, even years yet hospice for dementia can be a great help at this point. 

The biggest benefit for us is the 24/7 access to nurse or nurse practitioner, weekly in person exam and immediate access to meds, supplies, (wound care for example), etc. for my LO's health and comfort. With the recent decline you described it seems certain your DW would qualify and you can keep your regular Drs...just have more support. Good luck to you both

Jeff86

I appreciate the support and the advice.  More than I can say. I took DW to see the nurse practitioner yesterday.  I knew DW had lost a fair amount of weight but it was still somewhat of a shock to have the amount quantified.  DW tipped the scale at 101 pounds.  For reference, at her last doctor visit in the fall her weight was 120 pounds.  

Bed sores are stage 2.  There’s also risk of skin breakdown from incontinence.

Not much by way of treatment options for the weight loss.  DW drinks 2 or 3 bottles of ensure daily—it seems her body is no longer able to absorb and utilize nutrients and protein.  Thus, losing muscle mass.

Actively treating the bed sores to try to keep them from getting worse, and hoping they heal.  

I asked the NP if a hospice evaluation is appropriate now.  She felt that, between the weight loss and the skin deterioration, it might be, and will have the social worker call me to discuss.  Will discuss with the kids, but I think it’s time for palliative care if hospice is approved.

I have been surprised by my reaction to these updates.   Up until now, I had been thinking progression had been gradual, and this journey might well go on for a couple of years or more.  Now, it feels like time has telescoped.  My DW is dying, slowly, before my very eyes.  And my perception of time is utterly changed.

M1

I don't think any of are emotionally prepared for the reality of progression Jeff, no matter how much we think about it ahead of time.  Here it is.  I'm glad you took her...sounds like all the steps are appropriate.  I'm so sorry.  I understand that it's hard to believe you are really at this point.  With you in spirit.

toolbeltexpert

Jeff I am so sorry for you and your dw. Your a great caregiver and these last steps are really hard. Just know that we are all praying for you both.

Quilting brings calm

It’s only natural to be surprised to be told that news.  Especially when so many families seem to deal with this for at least a decade or longer.   Even when you know the eventual outcome, being told you’ve drawn close to that stage is a shock. 

Hospice seems to be a great support team for people here.  

DrinaJGB

So sorry to hear. I wonder if a doctor who specializes in palliative care/hospice who specializes in dementia would be a better choice for her now that some progression is evident.

  I asked this very question on the last visit to DH's neurologist (our plan has one on staff at several locations), and he simply said it wasn't necessary "yet". But he has not progressed much other than some weight loss and slower walking. He still gets around and does a lot of his own self care which has not changed in years. He initially suffered an acquired brain injury so the picture is a bit complicated--trying to discern what damage is from the scarring in the brain and what has occurred since from dementia.

  That type of doctor coordinates patient care with other entities as needed.

carry on

dj

Joe C.

Jeff, Sorry your wife is showing these signs of decline. It seams like my DW has been in mid/late stage 6 forever so I know how accustom we can get to the status quo. I hope you can get a handle on the bed sores. Hang in there.

Beachfan

Jeff, 

I am sorry your DW is declining so right before your eyes.  Like Joe C’s experience, my DH seemed “stuck” around stage 6 for years.  Prior to his placement in November, I tended to overlook all the subtle signs of decline and compensate for them.  It became second nature to me. Climbing and descending stairs, curbs, getting in an out of the car, a chair, a bed, self feeding, toileting and showering - - everything required total physical assistance, but it was just part of the everyday routine.  Now, at his MCF, I visit weekly and I can see him fading, fading, fading away.  It breaks my heart but I’ve learned to be stoic and radiate a positive outlook.  But I hate what it’s done to the kids and grandkids- - they are not stoic.  They are devastated and I can’t fix it.  You are in my thoughts and prayers.  

Battlebuddy

   So sorry Jeff. 

  When my husband qualified for Hospice , loosing 10 percent of body weight was required. You are definitely there and then some. 

    Also Hospice has a policy that says you can get a low pressure mattress top that helps keep pressure off sores. It is only given out if you already have a sore not to prevent sores. You are also there. 

    So I would call Hospice. You don’t need the social worker. They will just come out and do an assessment . I would highly recommend it just to get the free mattress topper. ( I bought my own from Amazon to prevent bed sores)  When you are at the point that you need their help, they are just wonderful. The emotional support alone is so great. 

   I’m sorry your there but they will come in like the cavalry cresting the hill . It will be so helpful to have them , even if it takes some getting used to emotionally.  

Joydean

Jeff I am so very sorry. Are we ever truly ready? I ask myself that question many times. When I think I can say yes then I see more changes in my dh and I’m on the phone calling his doctor. Saying all that to say I don’t believe any of us are ever ready. Prayers for you and your dear wife. 

Marie58

Jeff, I'm so sorry for what you and DW are going through.  If hospice comes on board, they'll be a great support for both of you. Blessings to you both.

Jeff86

Thanks for the sympathy and guidance.

I took the suggestions here and had hospice come to do an evaluation.   The determination is that DW is not progressed sufficiently for hospice services.  The hospice nurse indicated that DW would need to stop eating, be unable to walk, or develop an infection in order to qualify.

Needless to say, I don’t look forward to those events.

The good news is that the bed sores have substantially healed.   Combo of medicated pads, lotions, and so on.   I bought an alternating pressure pad and hope that helps, as a preventative.

I should also add that I had a talk with the kids regarding hospice, before having the hospice evaluation.  All are on board to accept palliative care on a go-forward basis.

Soldiering on, as I must.   As we all must.

toolbeltexpert

Jeff I am sorry that you can't get the Hospice care, I have heard others say to try another Hospice when one didn't qualify. I don't  know if that's available.  Praying for you.

Ernie123

Jeff. Your challenges remind me that eventually we are all headed to the same situation you are facing. I have attached a resource that is quite detailed in guidance for end of life care. I hope you might find something in it that will help you through the days ahead.

 https://hospicetoronto.ca/PDF/Acaregivershandbook_CHPCA.pdf

Ed1937

Jeff, I'm sorry she didn't qualify. But I agree with TBE, try another hospice. You might be surprised. Wishing you luck.

Kenzie56

Jeff, my 95 year old MIL had LBD and was in a MC facility for 18 months. Four months before she passed I contacted hospice with a prescription from her PCP.  Like your experience, the hospice evaluation concluded she did not qualify. I should have contacted others, but hindsight is 20/20. She finally qualified four months later and passed away less than 2 weeks after she started receiving services. I was so angry because she really needed the attention and comfort care that hospice provides during that 4 month period and her MC facility just did not have the staffing to provide such care.  It seems some hospice companies are way behind in the way of understanding/providing care for the needs of end-stage dementia.  My parents died of cancer and hospice was wonderful for both of them...I can't say my experience with this one company even came close. Other companies may have different guidelines - I would recommend getting an evaluation from another company. I will, when the time comes for my DH.

Joydean

Jeff, I’m sorry to hear about hospice, but I also agree with others that if there’s a difference hospice in your area keep trying. Wishing you all the luck out there.

ButterflyWings

Jeff, thank you for the updates. I agree of course with the others, if there is another hospice or 2 in your area, please have them evaluate her. I have read here that no need to share she was declined by a different hospice. I don't know that they would ask. You just want them to consider her needs, her weight loss and other progression you listed in your first post.

That's great news about her bedsores starting to heal though! I do hope you will find a hospice team that understands her needs for comfort care and that you both need and deserve the "team" approach to hospice care that many of us find is so helpful.