Friday, September 17, 2010

Beth’s health status – September 15, 2010

A while ago Beth asked me if Cheryl & I could post periodically to give you a health update on her. The idea being that the two of us have a longer memory and can update you with progression/regression over time.

Today was not a good day for Beth. She’s been feeling nauseous, ready to puke at any moment, and has had abdominal pain all day. Over the last 48 hours she’s been in the bathroom probably about 25% of the time.

She’s tired and very, very weak. When she’s weak, it exacerbates many of her other conditions. I went to a caregiver’s support group on Monday night and when I got back, Beth’s cognition was particularly bad. According to the careworker, Beth had had some TIA’s and had lost her vision. I checked in on Beth to let her know I was back. “Who are you?” she asked. “Linda,” I replied, but I don’t think it really sunk in. When she had supper later, it was served on a built up plate, where the front has a lip about half an inch high, and the back about 1.5 inches high. “Is this a dog bowl?” she asked. She has used this plate every day for the last 3 years and didn’t recognize it. I needed to explain to her that sometimes her hand doesn’t turn easily and how she could use the plate sides to help push the food onto her spoon. When she gets like that, I feel a tenderness towards her and want to protect her from the reality of her disease and all the bad stuff in the world.

This wasn’t the first time, by any means, that Beth has been confused, but it is happening more frequently. That worries me. How far will the dementia go? Will she permanently forget who I am or she is? Questions, particularly if they are asked quickly can be overwhelming for her. It takes a while for a question to sink in and then a period of time passes before she can find the words to respond. I try not to get impatient, but sometimes I do and I try to finish her sentences (often incorrectly) or I make the decision for her. This frustrates her and takes away her choice. But some days she needs me to make the decisions and I end up refusing to because I want to give her choice or I expect her to know the answer. The small questions often cause the biggest problems. How are you? Is this okay? Do you remember... They can be overwhelming. Then I see the distress on her face and I want to take the words back and keep her wrapped in a cocoon where nothing will harm her.

Tiredness and weakness causes cognition problems. Bet what causes tiredness and weakness? A lack of oxygen, erratic/slow heart rates, fluctuating blood pressure and pain are a few contributing factors. Pain is another big one. She’s still recovering from her hour of boxing last Thursday night. Ripped muscles which were starting to heal got damaged again on the weekend when she had seizures. She felt so horrible that she pressed her lifeline button - heart erratics, weak breathing, high blood pressure and seizures. When she has heart erratics she clutches at her chest, trying to rip out her heart as that is where the pain is coming from. “If I could rip it out when it’s happening, I would,” she told me again this afternoon.

Spending time in the bathroom is a necessity, but it brings its own troubles. Beth spends multiple hours on the toilet each day. She’ll have cramps and pain for hours. Her body tells her she needs to go, but the bowels don’t always do what they are supposed to. The bathroom is the warmest room in the apartment. Even with a fan on, she overheats. This causes weakness but also brings out the dementia. Half the time she needs to crawl out of the bathroom as it’s too hard for her to transfer her weight to a wheelchair. She didn’t have enough energy to get from the bathroom to the bedroom this evening. I got her onto a towel and dragged her to the bed. She passed out halfway there.

‘Are you my mommy?’ she asked when she came around. I usually only get this question after she’s been on the toilet for hours and it is late at night. At first, I used to explain that no I wasn’t, but that her mommy asked me to take care of her today. But that led to more anxious questions – where’s my mommy? Why did she leave me? I’m learning slowly. Now, I just say yes and that seems to make her feel safe – someone is taking care of her. Someone will help her to bed so she can rest.

She needs lots of sleep, and every day she keeps losing functional hours. Between the sleeping and the bathroom, there’s very few hours for her to do her work and to relax. She asks me to wake her up from naps and in the morning so she doesn’t lose functional hours, which usually means she’s short-changed herself on sleep. If she wakes up on her own it is because the pain pills have worn off or her bladder is telling her to pee out all the toxins that have accumulated in her body.

She’d love to go out and exercise – wheel a 5k circuit or participate in the Terry Fox Run. But it was all she could do today to sit at the computer and stay conscious long enough to work on emails and watch a little TV. She has goals she wants to achieve – get a blood test (we’ve been trying for two months) – write a blog (she still has one she wants to write about our vacation in July) - go boxing – go outside. It’s frustrating for her that her body won’t let her make these things happen.

I see Beth’s health steadily deteriorating. I watch the disease take over her life and change who she is and what she does. A year ago she could visit summer markets every other weekend – she’s been to two markets this summer. A year ago she could write a blog in about 4 hours, 3-4 times a week. Now it takes at least 3 times as long and she’s lucky to manage 2 blogs a week. A year ago she would be on oxygen about half her waking hours, now she’s on it whenever she’s awake.

Beth and I talked today about what the end might be like. Will the deterioration be relentlessly slow and drag out her days with no quality of life. Or will it be mercifully quick with so many multiple system failures her body just shuts itself off. We hope the latter.

19 comments:

wendryn said...

*hugs*

Thank you for the update. It helps me understand.

Lorna, Bob and Liam said...

Beth, thank you for allowing Linda to update us on your health in a way that you would, I'm sure, find debilitating.

Linda, thanks for doing this... while it must be difficult to just lay it out like this, I hope it also gives you a chance to share your thoughts, feelings and experience. I'm sure it's optimistic to hope that "a burden shared is a burden lessened" but at least know we are with you in spirit.

Please take whatever comfort you can, both of you, in knowing that people who care deeply are thinking and feeling about you every single day.

Matthew Smith said...
This comment has been removed by a blog administrator.
SharonMV said...

Dear Beth & Linda,
Thank you for sharing the truth with us. I'm so sorry that Beth is in a steady decline. It is hard to hear, it must be so much harder to live. When I'm going downhill, I have the hope that something medical or a new strategy will help and halt the decline - and that does happen sometimes.

Linda, I can sense the tenderness you feel towards Beth in your words. I know you are taking care of her with all your might and that your love encompasses her. Dennis really doesn't have to do anything "medical" for me aside from taking me to appointments (although he does a lot of other stuff to help me). I don't know if he could do all that you do for Beth, essentially keeping her alive. I think it would scare him. You have such courage & strength , another sign of the love between you.

Beth, it must be so hard to loose any of those precious functional hours. I guard mine jealously. I'm upset when I'm not able to do just a little art work for a whole day. And you work so hard,endure so much, body & soul to have those hours. Time & strength enough to do what is important and what you want to do. Time and strength - I wish I could give you more.

Dear Beth, I received a postcard from you yesterday. Dennis got the mail late - in the evening - as he had been at work. He brought the card directly to me (no glancing through the rest of the mail first). As I glimpsed it, my heart welled up - pure happiness. I grabbed it from him and did my little dance of joy (which no one but Dennis has ever witnessed). I was as happy in that moment as I am sad now. Thank you dear friend.

Love to both of you,
Sharon

JaneB said...

((((Linda))))

Thank you for writing, for caring, for enabling Beth to do her work as it becomes harder. It is much appreciated

rachelcreative said...

Glad you said to Linda and Cheryl to update us like this through your blog. I think I had put the pieces together from things you have said yourself Beth. Linda's post gives a good summary of where things are at.

As Wendryn says it helps me understand better

x

yanub said...

Oh, dear. That horrible bathroom. Is it at all possible to have a toilet chair in the bedroom, so it will be cooler and Beth won't have as far to drag herself? If that would be helpful, please tell me.

Neil said...

Linda: Thanks for posting that. First, I'm relieved to see that you're getting help from a support group yourself. That's important. Though I'm sure it might feel futile sometimes, it will help you.

It must be terrifying for you some days. Elizabeth is very lucky to have found as good a friend and wife as you.

Beth, dear Beth. Please remember, if nothing else, that you are loved. You're loved by Linda, and by your friends you've met, and by many of us who have never met you.

Thank you, Beth, for letting Linda post the update. It helps us understand, and it lets you rest while reassuring us, your loyal minions, that you're still with us and still need minions.

Love and zen hugs to you both
Neil

Raccoon said...

I think the best way would be while sleeping.

Elizabeth, I'm thinking about you. I got the latest postcard today. Cats, skelanimals, and lots of boobies.

Linda, thank you for sharing what's going on, and being so honest about it. I'm thinking about you, too.

Baba Yaga said...

Thank you for the update.

I never cease to be impressed by how strongly you and Beth stand together; I know it *can't* be seamless, you're both of you only people, and sometimes Beth shows us where the seams strain a little, but the postcards, the pictures of squirrels, and the torn muscles from boxing are all testament to your joint bloody-mindedness in the face of extreme experience. All that, never mind conventions and outings to the markets, could so easily have ended long ago.

"Do you remember?" is a proscribed expression for many dementias, as they progress; Beth's type is extra challenging, since it's not linear. And that's before you take into account the effects fluctuations in health 'status' even on normal memory, and multiply on dementia...

I hope for Beth to have an easier end, too. After so long a fight, *something* should come gently to her.

tornwordo said...

You really are an angel Linda. And I too hope for the latter, or even better - miraculous recovery.

Lene Andersen said...

thank you for this update. Sending both of you all my love.

Kate J said...

Having read Beth's recent thoughts on euthanasia, I really feel we (society) need to get our collective head together on this question.
Beth - you should have that choice, then you can decide to live if you wish, and for as long as you can bear, knowing the choice to die is always there for you. It's your life, and no-one else's.
Linda, my heart goes out to you. No one could wish for a more loyal and loving marriage partner than you are to Beth. I wish you strength to go on supporting her, and as much happiness as you and she can have together.
Love and peace

Aviatrix said...

Thank you Linda. We need such posts. Even though Beth tells us that her posts represent a distillation of her acme moments, it's hard to really understand how uneven her life is without a voice from the abyss.

Beth, I think it's cruel to ask Linda to wake you up. She doesn't want to disregard your wishes or treat you as if you can't make decisions for yourself, but it must be so hard for her to interrupt that period where your body and brain are getting some rest and a chance to repair. Why would you ask to have sleep ended prematurely when you spend so many hours of agony wishing you could sleep?

Also, the toilet chair sounds like a great idea. It will probably be more utilitarian than the ones used by Victorian royalty, but you get the same benefit of comfort and convenience without the gilding.

Elizabeth McClung said...

Aviatrix: Reasons I ask Linda to wake me up:

1) So that I can be awake when care workers are here so Linda can go do shopping, errands, resume's for work, or be able to take a break.
2) I no longer have the ability to understand how to set an alarm clock. If I do learn, I forget the next day.
3) Due to heat build up, I enter into a sleep from which I can't awake, even though my heart rate is 120-140 beats per minute, because my body is trying to sweat off the heat and cannot, thus I can sleep like that for a LONG TIME.
4) I am awake, if fortunate 12 hours a day, often more like 10 or 9. If Linda wants to see me at all, and if I want to not die in a month or two, I need to get up, to move the limbs and to be awake - having to sleep two different sleep periods, or every 5-6 hours awake only makes it more needful to be woken up - so often it is 'free sleep' overnight, then 'wake after two hours' and we both nap in the evening. Otherwise I might sleep until 2-3 am, and be alert and awake until 9:00 am.

I understand the concern, and with trying to fit in appointments, try to move a wake schedule to 10 am to midnight and deal with aftermath of siezures, bowel/intestinal blockage, TIA's, and other conditions, I already am awake for only 6-7 hours 1 out of 3 days. Trying to write emails, postcards, talk to Linda, watch TV, or maintain anything except the prison cell combined with pain requires constant fighting against disease enthropy.

Also, I have to be woken up every 2 hours to be cooled, and ever 4 for pain medication, even through the night.

But, I appreciate your concern for Linda - IT is just that Sleep does not always heal, sometimes it puts me far closer to system fail - it is a balancing act.

cheryl g said...

Thank you for writing this Linda. The weakness is the change I have noticed most in Beth. Even on good days she is still a little weaker each time than she was on her last good day. An outing of a few hours tires her now like an outing of a day used to exhaust her.

The memory problems are more frequent and longer. Many weekends now Beth doesn’t know who I am for the first day or half day. My presence frightens her if you aren’t here to reassure her I am a friend. I try really hard not to overwhelm her or frighten her more. I am learning that even when Beth recognizes me I must go slowly since rapid speech and rapid questions distress her. I also feel a strong protective tenderness and want to insulate Beth from the fear and anxiety.

The single simple thing which would help Beth most is adequate pain control. God how I wish we could have that. I grow so angry with the healthcare system which has failed Beth in so many ways. I grow frustrated with my inability to provide help in getting Beth the care she needs. I worry a lot. When I work to keep Beth breathing, to bring her back – am I doing the best thing for Beth? Am I projecting my desire to have Beth in my life and ignoring what would be best for Beth. It is a question I wrestle with. I don’t know how this will end but I too hope it will be mercifully quick.

Anonymous said...

Thanks Linda for the update

I was amazed to get a postcard from you Beth. I am sure that they make the postman stop for a bit to look, and I don't even get boobies, though they still fascinate me from when they were forbidden things. (My dad was the censor up until I was a certain age. I thought that finding the word buttocks in a book - Readers Digest Condensed fyi - was titillating)

You are reaching out to so many people with a real thing - not even virtual - and I admire the way you can stick to your plans.

All the best to you and Linda and Cheryl.

Annette

Aviatrix said...

Thanks for explaining why you need to be woken up. I'm so glad you haven't forgotten how to blog.

Linda McClung said...

Wendryn & Rachelcreative: Glad it helps.

Lorna, Bob & Liam: Actually, it was really hard to share my thoughts. I originally wrote a shorter version which was very factual and stark and Beth encouraged me to put more feelings into it. A better blog in the end.

Jane & Lene: You’re welcome.

Yanub: The bedroom is almost as bad as the bathroom. Although we have talked about having to put a commode in the bedroom at some point. Once the construction is done across the street we can access our bedroom window again and can either put the air conditioner in or open the window as needed. There are a few more months of construction, I expect.

Neil: Yes, the Caregiver’s Network is great. We have monthly meetings where everyone has a chance to share how they are doing, ask questions, etc. They also offer some very helpful workshops – some even over the phone.

Raccoon: About being honest… it’s difficult sometimes looking at the truth in the face. But also, it is difficult sometimes to find the right balance between what to say about what’s going on. The balance between giving Beth dignity and at the same time giving her online friends a realistic idea of what’s going on. I’m going to try to write more blogs about it on Girl’s Gotta Fly.

Baba Yaga: It’s definitely not seamless, but we never doubt that we love each other and that the ‘us’ is important enough to work through the rough spots. Beth is very forgiving and shows the seam strains so seldom. It seems that as the disease progresses, particularly with the dementia, that more seams start to show. For me, the stress and lack of sleep cause me to be less patient, more snappish, and as my previous counselor phrased it, makes me a not so nice person to be around. That’s why naps and respite are so important to me.

Tornwordo: Yeah, a miracle would be nice right about now. I’m definitely not an angel, I feel very mortal most days;).

Kate J: Thanks for the well wishes. Ever since a discussion I had in a Junior High class, I thought euthanasia was a good idea. And as time goes on and I see and hear about the suffering some people have, my conclusion is reinforced. But it has to be the ill person who makes the choice. In theory, I support it, but when it is my loved one it’s difficult, if not impossible to put the desires of them in front of my own desires. I can know that it would end Beth’s suffering but I’d be left behind.

Aviatrix: I agree that I am loathe to wake her up sometimes, if she is so weak or has spent so much energy leading up to her sleeping. But I can also understand why Beth is determined to squeeze everything out of life that she can. She has things she wants to get done, and as she also mentioned in her comment, she sometimes gets up so that I can do the things I want/need to do.
Beth: Yeah, the overheating is a big issue. If you overheat, you can’t wake up. Sometimes I’m not sure if you’re not waking because you are too exhausted, too hot, or a combination of both. When you are overheated it can take 40 minutes to get you cool and conscious enough to get up. I’m always a little amused when after 20+ minutes of trying to wake you and cooling you, you are alert enough to look at your watch and then ask “it’s 9:30… you were supposed to wake me a 9:00… why didn’t you?’ It sometime takes that long to cool you down.

Cheryl: I wrestle with the same thoughts. Should we bring her back or should we let nature take its course. If she’s meant to stay alive, her body will eventually kick in, right? But, I wonder, what damage will occur in the meantime? More brain damage? More system failures?

Annette: We’re glad you liked the postcard. It’s a joint effort to keep sending out these little pieces of joy.