Update: Progression

Jeanne C. · February 14

Thank you everyone for your thoughts, advice, and support. This forum is amazing.

The update: at his doc appointment this morning, he tested positive for covid.

I still firmly believe there's some progression but I (and his pcp) think the agression last week was probably a result of him feeling lousy and not being able to express it.

I'm going to discuss hospice with his memory specialist in April (I'm not discounting the advice several of you have given). But I'm also curious to see how he's doing after covid runs its course.

And I'm hoping the documentation from his pcp will be enough to get him reinstated at daycare. The director strongly indicated he should reapply once we figured out what was up. They're equipped to handle ADLs for clients with more severe symptoms than my husband. They cannot have the agression though. 🤞

Original post:

Things have been sliding downhill. Over the past few weeks he's moved into urinary incontinence with a side order of occasional bowel incontinence. It had been at night but not so much anymore. I'm seeing an increase in confusion and a decrease in speech. We have been able to reduce the agitation/anxiety for the most part with a bump up on Lexapro. But today was bad. He apparently became suddenly aggressive at daycare and punched one of the aides (who's ok). They have exercised their grounds for discharge.

Yes, I had his checked for a uti and it was negative.

I know this is how it goes. Every day is a little worse. But I'm feeling a little overwhelmed right now.

JeriLynn66 · February 14

Jeanne, I’m so sorry 😞 Big hugs to you ❤️

GothicGremlin · February 15

I'm so sorry, @Jeanne C. And yeah, we all know this is how it goes, but somehow knowing doesn't make it any easier.

Peggy has never hit anyone, but she went through a phase where she could suddenly go into a red hot ball of anger at the drop of a hat. I'd never ever seen her so angry. It was scary to see. I could imagine her hitting someone while in that state.

Thinking of you ...

Brokenhearted in Illinois · February 15

Why isn’t there more help for us during the later stages.? My heart goes out to you.

CStrope · February 15

And with every outburst, we think that it will be the last one.....then there's another, and the cycle continues until they reach a different milestone. Every time DH has one of his anger/frustration outbursts, everyone always tells me to remember that its not "him" that's doing it. I know that, but the emotional and physical pain still hurts.

SSHarkey · February 15

I am so sorry! I would feel exactly the same. We’re not there yet. And I don’t want to go there. My heart goes out to you.

M1 · February 15

Jeanne i hope his docs can help, he obviously may need more/different medication. But to lose your daycare, ugh, puts so much back on your shoulders. Im so sorry.

Denise1847 · February 15

https://alzconnected.org/discussion/68181/progression

Jeanne, I am so sorry for what you are going through. My words may not comfort you at this time, but please know that I feel your fear, exhaustion and suffering and I pray for it to end. May you find strength, comfort and peace somewhere in this journey in hell.

DCCEPEK · February 15

https://alzconnected.org/discussion/comment/198271#Comment_198271

I totally agree with you on this subject prayers

mrahope · February 15

It's hard to do anything except take the most drastic measures when even professionals can't tolerate our LO's behaviors. It's terrible to think that psychiatric hospitalization might be needed, or MC earlier than you planned. But what alternatives are we left with?

marier · February 15

My DH was discharged from his day program in late Dec. due to his anger issues when staff was attempting to change his adult depends. He is aggressive verbally and physically. This has been an ongoing issue at the day program and at home. At home I am able to cope because I can walk away and reset him. However the day program isn't staffed to do this. He is also at times been confrontational with other clients at the day program

I am working on medication changes and exploring other day programs in the area. Seroquel hasn't been helpful. I have an appointment next week with a geriatric psychiatrist. Nuedexta has been helpful somewhat with the anger outburst and rage. I am hopeful that other medications can be helpful without making him a zombie. Rexulti vs risperdal I am sure will be explored. I know Rexulti is pricey and may not even work.

I really want him in a day program for his sake and mind.

KMcCalla · February 16

Day Programs are a Safe Place for Loved Ones to spend the day. Healthy Meals and snacks are provided; toileting is addressed; and staff engages them which is very good for Cognitive Stimulation and Socialization/Support. Many of these facilities have Support Groups, Education, and Resources for Caregivers.

However, as the disease progresses, the Caregiver(s) must recognize the need to move on as evidenced by the Staff's (perhaps staff-patient ratio/shortage of staff) inability to manage the patient's changes in behavior, need for more assistance and care (eg. Increased help to engage in activities, eat meals, and follow direction; increase in agitation, incontinence; clothing changes, high risk for falls, ect.) in this stage of the disease.

Caregiver considers what's safe and best for their LO in this level of care.

Prayer helps (Phillipians 4:6&7)

gampiano · February 17

Jeanne, have you had a hospice evaluation? It sounds like he is at another stage. The services they provide can be very helpful. I don't know what i would have done without them.

Jeanne C. · February 17

https://alzconnected.org/discussion/comment/198572#Comment_198572

Hi Maureen- thank you for reaching out. I haven't had him evaluated yet. He's still ambulatory and somewhat verbal. It doesn't always make much sense and it's a lot of perseveration, but well above the "6 word" guidance for stage 7a - not that the stages really line up for FTD. I spoke with a friend who is a hospice nurse manager and she told me I can have them come in, but it's unlikely he would be approved. My plan is to have a good talk with his gerontology provider after his next appointment in April.

Daughter of a Marine · February 17

Jeanne, I'm so very sorry you're going through this level of stress, exhaustion, frustration and heartache. I'm right there with you. My DH was diagnosed with dementia 12 yrs ago and his progression has been slow but within the past 2 years there has been steady decline. He is rarely in reality - thinks we are in whatever TV situation he's watching. Has severe aphasia so can't find his words. I can no longer have a conversation with him. He is here physically but the essence of who he is, is now gone. He primarily lives in the mental space of when he was working (drove a truck). Mumbles about driving logs, looking for money, can't find his truck, etc. Asks me if mom called (she's been gone for 20 years). He's recently begun having episodes of incontinence (both ways) and becomes very agitated. Insists on sweeping the lawn with a broom, is outside in 10 degree weather with no hat or gloves and in the middle of the night, loses his way to our room from the bathroom (we've been in this house for 40 yrs). Our 4 kids and I are recognizing that it will soon be time for placement and we're working with an elder law attorney to prepare for Medicaid. This will be the hardest decision I have ever had to make - there is no happy ending here. I pray every day for wisdom, strength and courage and will be praying that for you as well, Jeanne. God bless you!

Ed1937 · February 18

Jeanne, I don't have anything constructive to add, but I just want to say that we care. I'm sorry.

Cecil Jones · February 19

https://alzconnected.org/discussion/comment/198640#Comment_198640

I agree with gampiano, you should get Hospice involved. My wife just went on hospice and it's been a very big help. I didn't think she would qualify either. Even if your husband doesn't qualify he can be reevaluated. I honestly believe your friend is wrong. Nothing to lose by contacting them and it could really help.

gampiano · February 20

Hi Jeanne C,

Just an fyi.When I had hospice come to evaluate my DH, it was for palliative care, as I didn't think he was at the stage to qualify. He was ambulatory at the time, and could speak in simple sentences. It was a shock to me when the 2 social workers interviewed him, and concluded that we should have the nurse come over the next day and evaluate. They all recommended hospice and he was admitted to at home hospice the very next day. He died 6 weeks later. They were amazing, and I couldn't have managed without them during that time.

Thinking of you daily,

Maureen

Wag91 · February 21

https://alzconnected.org/discussion/68181/update-progression

Hi Jeanne,

My DH has been with in home hospice going on 16 months. The dementia dx made him qualify the day of evaluation and had a team in place the next day....I truly believe this is the only way I have been able to keep him home...they are angels 😇 on earth.

GothicGremlin · February 21

@Jeanne C. You know, Peggy's had covid a couple of times, and both times, it changed her behavior, and there was some decline each time. She bounced back some, but not completely.

Fingers crossed that they take him back to day care!

Also, hospice is a lifesaver. I didn't think they'd accept Peggy, but they did ... so I'm in the camp of "ask and see what they say."

Update: Progression

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