Scooting to the bathroom & fear of stage 7 & anxiety

LadyTexan

DH and I still sleep in the same bed. From his side of the bed, the toilet is a straight shot of about 10 feet. DH gets up several times during the night to go to the bathroom. I get up to help him especially when it comes to sitting properly on the toilet seat. 

Last night, he woke up and said he needed to go to the bathroom. I was beside the bed to help him. He slid onto the floor and scooted himself to the toilet. I helped him get seated. When he was finished, I helped him walk back to bed. Then he laid across the bed diagonally, so there was little room for me. Usually, I can situate DH in the bed so I can fit too. Last night, he was like dead weight. 

I am very anxious because I think DH is moving into stage 7. Stage 7 frightens me for so many reasons.

• It is the final stage.
• DH will lose the ability to talk and walk.
• I am worried I won't be able to adequately care for DH.

Earlier in the journey I selfishly hoped we could skip Stage 7. Of course, this is something I have no control over. My mind is spinning and my emotions are out of control. No doubt the COVID stats and Afghanistan situation are fueling my ill ease. Fair warning - if even one political comment or unkind word is added to this thread, I will delete it.

Today I will take special care of myself to reduce the anxiety. I will verbalize gratitude and drink herbal tea and say the serenity prayer. (many times I am sure) 

Thank you for listening to my scattered thoughts. I am grateful for you all.

DrinaJGB

Your post took me back several years during the first year after my DH was hospitalized for 4 months for infectious encephalitis. The viral invasion is a rapidly fulminizing and necrotizing assault on different areas of the brain including bilateral temporal which controls memory, and the insular cortex which controls motor functions, emotions, pain, etc. --leaving behind a profound acquired brain injury.

When my DH finally came home he was still in a wheelchair, and suffering from post encephaltiis syndrome. This syndrome caused many strange and even bizarre behaviors such as inapproprate sexual comments, trying to eat things that were not edible, swallowing deficits, taste and hearing deficits, somatic deficits, combativeness, hallucinations----and motor deficits.

 Although he was still wheelchair bound---one night I heard him sliding out of bed and starting to scoot across the floor in order to go into the kitchen. I was shocked that he was able to achieve this at all, and quickly got up and followed him.

He did this for many months, but could not get himself up off the floor leaving me to have to stand on the bed or a low table and get behind him to pull him up by the shoulders. He also had severe balance issues, so anytime he was moved at all, he would push back violently. One time he pushed me so hard my back gave out by slipping a disc. Several days later I was in the ER with excrutiating pain.

Although the pathology causes are different, the damage is still prevalent , so it sounds like your DH has had a prgressive involvement on the area of his brain for motor control. My DH slowly got over his but it was due to some recovery over time while his brain lesions in that area were re-mapping around the damaged parts caused by the viral assault.

What I can say to you is that I have been caregiver for DH for over 11 years now, and that time I just described to you was like living through a particular kind of Hell. My heart sunk when I read your post. I still suffer from back pain that has progressed over the years to sciatica and numbness in hip, leg and feet. That was from lifting my DH during his days of complete madness.

It might be prudent to contact his doctor with this new symptom. You need to protect yourself, and if that means getting help for lifting , or to the point of placing him in a facility for his and your own safety. I am so sorry you are dealing with this. My heart is with you.

June45

LT, I totally get what you are saying.  My husband is also is a step away from stage 7.  He can barely walk now and is basically home bound because I can't handle a wheelchair to take him out.  I will have to use medical transport to take him to the dentist, etc.  He is urinary incontinent but I still take him to the toilet during the day to save on the expense of underwear.  Yesterday when I was taking him to the toilet, he said the toilet looked "scary".   Even though his urinates in his underwear during the night, he still gets me up a few times at night.   I have been on this road since 2010 when I noticed the first signs and I am flat out exhausted and constantly anxious. I have been doing this totally by myself 24/7, 365. I have no relatives that live near by to give me a brief respite. (I did have one visit from my daughter this summer but it had been 2 years since she had been able to visit prior to that.) I have to hire caregivers when I have to go to the doctor but they have been very unreliable. I guess I am a little different than you...I am looking forward to moving on to stage 7 because I want this hell to end.  And I hope no one tells me that I should cherish the time together.  There is nothing to cherish.

loveskitties

Dear LT, 

Of course you are anxious and fearful, we all watch minute to minute for those symptoms of the next stage hoping they never show up.  

How is your DH today?

It is natural not to want to think about stage7 and all it brings for all the reasons you list, however now that you feel it approaching you have to give it some thought.

You need to determine now the "if this happens, this is what I will need or have to do", or start contacts who will be able to assist you both when needed.

While the "plan" is not on the fun activity list, it may help to give you a feeling of more control of the situations to come.  

As I said in my own post, this disease just keeps taking and taking.

Prayers for you and your DH and hope this was just a very early warning sign and the full effects of stage 7 are still a long ways off.

Mint

(((LadyTexan)))

Battlebuddy

  I feel for you Lady Texan. It might be the dawning of stage 7 , but it might not. I’m not fully there in 7 so can’t speak to that, but I am definitely on the edge , swinging in and out. Right now husband is sleeping around the clock in a hospital bed. I always thought him in a bed would be aweful. But it is actually easier than the stage before: no more puddles of urine on the floor. Things are more contained. You can walk away from the bed when he gets nasty. More free time. 

   I think you will handle it- whatever it brings. And you will have Hospice to help and guide you. You got this! 

Ed1937

Lady, I always get up with my wife if she gets up during the night. There are times when she doesn't know where to go, and I have to show her. She also often gets back in bed crossways. But when I tell her to scoot over, she does. 

You have my sympathy because I know your DH is much further down this path than my wife. Hopefully he is not flirting with stage 7 yet. We are here for you.

LadyTexan

Thank you friends.

Worrying is such a useless emotion. Someone told me, worrying is like rocking in a rocking chair because there is lots of activity, but it doesn't get you anywhere. Another friend asked me, why worry, when you can pray. In truth, I find sitting in a rocking chair to be a calming activity. Connecting with my creator through prayer is also calming for me. My faith strengthens me.

The caregiver heroes on this forum, often remind me not to look for trouble. DH might have Stage 7 symptoms, but maybe he won't have all Stage7 symptoms. If or when he does, I will manage the symptoms to the best of my ability even if it means placement. In the meantime I will do my best.

My husband is better today than last night. He is walking around just fine. He is communicating with me effectively, although his once extensive vocabulary continues to escape him.

I will revisit our environment to consider what changes might be necessary if he loses the ability to walk safely. I will plan and prepare, but it is important for me to remember that worrying about the future only distracts me from appreciating the blessings of today.

Again, thank you all for helping me hold on while this emotional roller coaster takes me on a chaotic and relentless ride. 

aod326

My husband used to tell me not to borrow trouble, a phrase he was told by his AA sponsor. With a progressive disease, though, it is a fine line to tread, as you have to be thinking ahead to know how best to avoid and/or handle the situations we all know are coming. I always want to feel I have a plan in place for any eventuality - including huge details as to exactly the steps I'd take if I ever won the lottery! - but thinking of every eventuality includes the potentially bad outcomes. You always sound as if you weigh up things carefully, you know your options and that you don't spend time second-guessing yourself too often. I always imagine/visualize you standing tall, taking a deep cleansing breath and facing the next situation head held high. (You may not feel like that, but that's what comes across to me!)

You do a marvelous job of taking care of your husband, with a great deal of grace. That doesn't mean you can't still sometimes feel anxious; dementia is such a crappy hand to be dealt, for our LOs and their caregivers.

Like you said, you'll do your very best with whatever arises, the same as you have done all along. 

jfkoc

In our family we said "don't say monster" instead of don't borrow trouble. Either saying is valuable.

Skipping stage seven is a very creative thought but not going to happen.

I will share that I went through stage seven with my husband and it was manageable with some outside help. There were some firemen who would help get my husband up off the floor. Before that there were one or two nights heslept on the floor with no problem. I added some daytime help and toward the end had 24/7 care and Hospice. 

At night I would tell my husband that I was putting the dog out and would exit to another bedroom.

I know full well it could have been more difficult. Hopefully your "7" will be as easy.

Pat6177

A saying I use is “My feelings are real but they might not be reality”. Sometimes they are real but sometimes I temporarily lose my perspective. I validate my feelings (as you are doing by writing on this forum), take lots of deep breaths and then ask myself what reality is and then come up with a plan. My guess is that you have a plan of some type. It will become clear if now is the time to implement your plan. 

I have not been part of this forum for that long but appreciate so much that people do come here and vent their feelings, get support and then move forward. 

Lills

When my DH was first showing symptoms in 2011 and I 'knew' he had some kind of dementia, I used to read the progression of the 7 stages of Alzheimers.  I was terrified and I didn't know how I could deal with his long illness.  Somehow, you just do it.  I've always loved the saying, "I learned how strong I was when strong was the only choice I had."  Trust me, I was NOT strong in the beginning of DH's disease!  His incontinence almost killed me in the beginning  Now, I could have a diaper changing competition with a CNA and win!

Lady Texan, I trust that you will be able to handle stage 7.  For my DH, stage 7 is the easiest in terms of caregiving, not in terms of accepting the inevitable.  In my opinion, stage 6 was the most challenging.  

I'm sure stage 8 will be the worst...

As always, one day at a time.  

Jeff86

LT, thanks for your post.  I admire the clarity with which you express your feelings as well as updates on your DH’s progression.

My DW has been at stage 6d for some time now.  While I believe (in principle) in not borrowing trouble, I am a planner by nature and by profession, and I can’t help but think ahead to what is inevitably coming.  And I dread the onset of stage 7.

This disease has already robbed us of so much.  My best friend is gone.  But the cruelty of stage 7 is perhaps the worst—the loss of speech, mobility, swallowing, affect.  I know, DW may not suffer every one of these, but I think the grief that lies ahead will be even greater than the grief already experienced.  What I dread are two things:  the suffering my DW will undergo, and my watching that suffering and understanding it as she will not.

AD demands all our strength, adaptability, compassion and courage.  You have these in abundance, LT.  Stay strong!

Doityourselfer

Stage 7 has been much easier in terms of caregiving for me.  My husband stays in bed longer and sits on the couch most of his waking hours.  He still becomes agitated but it has become less frequent but when it comes to changing his disposable briefs before he goes to bed he'll get agitated but I get the job done anyway.    Nothing about this nightmare disease is easy.

LadyTexan

Thanks everyone. You carry me through the hard times and hold me up. I am grateful for you all.

I found this picture about putting on my big girl panties and making a plan. It made me giggle.

LadyTexan

Thank you everyone. You carry me through difficult days. I am grateful for you all.

jfkoc

Stage 8 has it's own version of horrible!