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genden69

For caregivers only

31 posts in this topic

With apologies to those who are not caregivers, end stage issues are probably not what anyone but caregivers want to read.  I understand that need and don't want to trouble anyone diagnosed with PD.  As a caregiver, I need support from other caregivers.  As some of you know from reading my posts, DH has been diagnosed for twenty years.  He has Parkinson's Dementia, Parkinson's Psychosis, severe orthostatic hypotension, and is totally bedridden for the last three plus months. In spite of all if this, his vital signs are good.  He has no swallowing problems and is still eating. I am caring for him at home with the help of hospice since he has been bedridden.  He has developed a bedsore in the tailbone area that despite our best efforts is getting worse.  Today the nurse put in a catheter thinking that if the area is kept dry, it may prevent infection.  There is risk of infection from the catheter so we have to weigh the risks. Where I need help and support is with the emotional roller coaster of this end-if-life care.  On an intellectual level I know he has very little if any quality of life.  Intellectually if he were to pass tonight, he would be in a better place.  Intellectually, if he were to pass, I could get on with life for the few years I will have left.  Emotionally it is much different.  In the morning the first thing I do is check to see if his covers are moving up and down to confirm breathing, then I plan what I will prepare that he might like to eat with plan B and C in mind if he isn't interested.  Though he sleeps a lot, I spend the day focused on caring for him.  It is emotionally wrenching when he cries our and moans when I or the hospice aide changes his brief or bedding or give him a bed bath.  His body hurts and he cries out when moved because of not moving and Parkinson's stiffness I guess.  It is emotionally wrenching that he is in his own reality of dementia.  The fact that the DH that I have been married to for 56 years isn't in that body  any more is a painful reality.  It is emotionally wrenching that there is no cure for his condition and that he will die, but at the same time I don't know how much more time I can live with this emotional pain.  I am sure that all of you caregivers are dealing with similar struggles.  How have you been able to deal with it?

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Genden,

i have not been where you are...my thoughts and prayers are with you.  I am glad you felt safe to share your feelings. 

God bless.

NN

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As you know from our private conversations, my husband also has pretty severe psychosis.  We tried Nuplazid, which improved, but did not eliminate, his psychosis.  It helped quite a bit with the delusions, but not hallucinations.  The insurance company decided they wouldn't cover the cost any more, so we're fumbling around again. The hallucinations have been reduced by substantially lowering his levodopa dose.  Fortunately, although his motor skills suffered by the reduction, he is still able to manage OK, except things requiring small motor skills, like tying his shoes.  I will try just about anything to make our lives a little better, so we are now experimenting with MM.  We're early in the experiment, so it's hard to say whether it will help.

Next week we will celebrate our 32nd anniversary.  I'm so unhappy that the guy I married is no longer here.  In fact, he sometimes doesn't know who I am or thinks there are several of "us".  I can relate to everything you write about how emotionally draining it is.  It is also a very lonely experience, because as much as non-caregivers think they know what is going on, they really don't.  I am much more sympathetic to anyone who is dealing with a remotely similar circumstance.  Please know that I think about you often. 

 

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Oh boy.  I have nothing but sympathy and warmth to send.  I have cared for 2 parents at this stage of life, and it was wrenching.  I have watched and helped my friend with PSP go through this.  Hang on.  Take walks.  Ask people to come in and sit for 20 minutes so you can run and get a cup of coffee somewhere OUT  of the house.  Talk to the hospice people.  If he is in pain, can they up his pain medication to make him more comfortable?  There are risks to that (depressed breathing, addiction) but it may be worth exploring.  Meditation for you may help.  Classical music playing softly in the background can also keep your spirit calmer as you go through this.  Reaching out to friends, I hope you know you can pm me at any time, and I will respond with warmth, sympathy and respect.  Deep breaths, this must be the hardest loss of all.  Certainly my experience is a very pallid reflection of what you are going through.

We're all here to help in whatever way we can.

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Genden,

Not looking forward to what you are going through. Just echoing what others have said,

Coach

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In some aspects I have been there, my DH is now in a Nursing home. The horrible stories I could tell you before I finally had to admit I could no longer care for him, and for many reasons there was no other objects. I am still in a stage where I feel guilty for giving up so to speak. I still wake up thinking I have heard him fall out of bed. Everyone tells me how I did all I could and that DH is in a better place. I do agree that he is in a marvelous facility that love him to pieces and is taken care of so well. I go to visit almost every afternoon, when I leave I cry all the way home. He is in the beginning of Stage 5 but not bedridden, is in a wheelchair, and able to still get up with much help to do short walks with the walker. He has some discomfort with pain, but so far with the Facility getting him to stand and do the brief walk and other sitting in wheelchair leg exercise it is not to bad. I know it will get worse. I cherish every day when I go in to see him, some days he cannot speak at all, or if he does no way can I understand him. Then when he says he has gone to the bar lol, slept at someones house etc etc I try to find humor to myself knowing this is all not true. He still eats good, has loss alot of weight. his BP goes up and down, and a few other issues they monitor and watch daily. My doctor told me.. your DH has PD on his right side which is reaching up to Heaven, on his left side is the DH you know and remember. Cherish the left side when he is talking good etc. I try to hang onto that. I do not know exactly but having been DH caretaker for 13 years and the last two years being where I just wanted to throw up my hands and walk out.. I can feel for you. My emotions come and go and DH has been in the Facility only 4 months.

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genden, you have been on my mind and in my prayers.  Those of you who wrote and can relate by having gone through (or are still going through) the similar issues is always especially comforting at a time like this--for all of you.  I feel for you each and will be thinking of and praying for you. 

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Genden, l am only one year in from my hubby's diagnosis, so in no way do l know what you are experiencing. But l care. I hear your quiet desperation and so wish that l could comfort you and your husband.

My husband has multiple health issues, Parkinsonism, vascular dementia, and Gasteoparesis his worst problem. He can still function normally for the most part, but the dementia is slowly starting to be ever present in our daily lives. I have to do all household tasks, errands, appointments, heck l don't need to list them you all live this and much worse every day. I do miss him being there for me, rarely he will touch my hand or utter a kind word of thanks to me and l cherish it so. l too struggle with a moment of anxiety when l return from an errand until l make sure all is well.

l have no suggestions for you, so l will close with letting you know l am here if l can ever help or support you in any way.

 

 

 

 

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Thanks to all of you for your kind compassion, support, and helpful suggestions.  I mentioned that yesterday they put in a catheter to prevent urine from contaminating his tailbone bedsore.  He was uncomfortable last night, but I thought it would take a little getting used to.  I was up with him most of the night.  This morning he started having periodic pain spasms.  He would cry out in pain, flail around for a couple of minutes, then settle down.  These episodes kept getting closer together and more intense.  This afternoon I called hospice.  Because it is Saturday, they contacted the on call nurse.  She was occupied with another case, so it was a couple of hours before she was able to get here.  In the meantime, it was very difficult for DH, and wrenching for me to watch.  When the nurse got here, he had a severe pain episode and was grabbing in his bladder area.  She removed the catheter and it was covered with blood clots.  She said he was so thin the catheter was rubbing on the bladder and causing irritation.  He is resting comfortably now.  I hope for a good night of sleep for me and him. I am putting extra absorbing pads in his brief to protect the bedsore area.  Hope it works.  The responsibility for care is heavy.  As Jsaltsgaver said, those who haven't experienced this level of caregiving don't have a way to relate.  Each day brings new challenges and requires an extraordinary amount of resourcefulness.

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The Caregiver’s Reminders

 

There’s sixty hours of chores, 

To complete in twenty-four.

 

There is never enough time,

To rid the bathtub of its grime.

 

There’s tons and tons of weight  to lift.

Does this need washing? It passed the sniff.

 

And If I have to make one more call,

I’ll smash my head against the wall!

 

I’m pretty sure sometime today a shower was to be taken,

But my problem is I’m not sure whose, I think it’s mine- am I mistaken?

 

There’s a clock on the wall that says it’s five past eleven,

It can’t possibly be? The last time that I glanced at it, it wasn’t even seven!

 

There are questions that I have to ask my higher power.

I’ll demand answers at the church. Perhaps God’s hiding in the tower?

 

Where are you God? I want to know when it is 4 am,

If this is something meant to be I can not see the plan.

 

“Where am I?” God smiles back “I’m in every act of love,”

“In laundry, in a visit, or when you help them find a glove”.

 

I have entrusted you my child with TWO of my beloved kids,

To care for you, yourself and another one. Yes I did!

 

To be my hands, and to hold theirs until their time is ended,

And then to let them go knowing where they are headed is simply splendid.

 

I’ve given you an honor that’s so hard to recognize,

But if you take a moment to look in your loved ones eyes…

 

You’ll see the bitty baby that came to save us all,

For when you serve the least of these, you serve me as well.

 

Sooner than you think, this season will be in the past,

And you’ll be separated from them, until I call you home at last.

 

Still, child I know you’re weary, you’re stressed, I know it’s true,

And at times it feels like I have completely forgotten you.

 

So when you speak to me, you’re welcome to yell, to scream, toSHOUT!

Just be sure to take a moment remembering what this lifetimes all about…

 

…the love that I showed you when I hung upon a tree…

…Kid you learned that lesson well, as I can surely see.

 

March, 6th 2017

 

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To continue the saga.  Last night around 11:00 when I was preparing DH for the night, I noticed that he was extremely hot to the touch.  He had been restless for a couple of hours, pulling off his sheet, fidgeting.  I took his temp and it was 104.5.  I quickly gathered cold wet wash cloths and covered his upper body.  I was able to get him to drink a glass of cold lemonade.  It brought his temp down a couple of degrees.  Then it shot right back up.  At around 1:00 a.m. I called hospice.  A sleepy voice said a nurse would call.  No nurse called.  At 6:00 a.m. His temp was 103.5.  I called hospice and talked to a nurse who said to give him Tylenol.  I just had gel caps and he won't swallow them.  The case nurse came at 9:30 a.m.  While she was here, his temp started to drop.  She gave him a Tylenol suppository.  His temp is now normal and he is sleeping comfortably.  I concluded it was related to the catheter, but the nurse isn't sure and is waiting and observing.  It is so hard to see him going through this and is exacerbated by the fact that I had almost no sleep for two nights of this weekend. 

Edited by genden69

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Genden- I am so sorry for what you are going through. I'm sorry hospice was slow to respond. I'm sorry you are sleep deprived during a time when you need that respite most. I'm sorry Parkinson's doesn't fight fair. I'm sorry that barring a cure we are all going to lose this battle. And I'm sorry that I don't have any magic words to make this hurt any less.  I am praying for you.

 

 

Linda- yes I am the author of that poem. Creative writing has been a great stress relief for me recently

 

 

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Genden, I hope you are able to take a nap.  Next time you contact a hospice nurse, ask for advice.  Ask for help with this temperature, or an explanation of its possible origin.  It may not be the catheter.  Sometimes, if someone is very ill and weak, their temperature control can go off.  Was he in pain at that time?  Or just fidgety?  His comfort (and your ability to rest!) is paramount.  A respectful hospice nurse should be able to help with those questions if you ask them.  Don't feel pushy if you ask for  one nurse over another if you are more comfortable.  Also don't feel embarrassed about talking to them that you felt left alone and let down by their lack of response.  Ask them what is a reasonable call back time when you need help.

Keep on keeping on, and deep breaths.  We are holding you in our thoughts.

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I speak for myself only but I rather suffer the pain and discomfort for my mom.   Growing old and getting sick really sucks.  Watching it happen in front of you is pure torture. I'm thinking of you Genden.

 

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Genden,

please remember you are safe here.  We can hear what you hesitate to tell loved ones or friends....yet you need an outlet.  You know the CG's here are exceptional with empathy, knowlege and understanding.

May the Lord grant you peace and respite. 

NN

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Until someone needs a CG will they truly know what a sacrifice it is to be one and how it takes commitment and energy and the love of the person to want to do this.  My own sister doesn't get what I do and it's just sad that I do not have the support needed to do this job.  One day she will understand when it's her turn.   For now she freely says she wants her kids to send her to the home when the time comes.   It is so easy to make that statement but I know when she gets near that point she will try her hardest to find other options.  I'm crazy and I'm stupid to keep doing this.  Whatever... 

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Miracle Seeker, you have to do what you feel good about and not worry about what someone else thinks.  At the end of the day we have to feel good about our decisions and actions.  Bless you for caring for your mom with such love and sacrifice.

Edited by genden69

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Thanks Genden.  Only a CG realize what we do.  My sister and I had a huge fight last night.  She insisted that I send mom to the NH so we can all have our lives back.  She lives with a guilty conscience knowing I do everything and she does zip and enjoy her fabulous life.   I wanted to slap her so bad last night and give her a serious tongue lashing.   She wouldn't have this great life if it wasn't for mom giving birth to her and sacrificing so much for her.  I'm so glad that mom has dementia and was not aware of what we were talking about because she would have died of a broken heart right there and then. It is one thing to have a parent voluntarily say they want to be placed in a home but when it's the child who decides to do it to be free of responsibility then we live in a pretty pathetic society in my opinion.

My sister complained that she cancelled 3 trips abroad last year due to having to come and help me with mom when she had one infection after another.    What kind of daughter would see this as a burden?   I have a co-worker who took off for Israel in an hour's time to be with her sick mom after hearing she was not well.  She took 2 weeks unpaid leave from work to do it.   People like us do exist.   My sister thinks what I do is not normal and that no one does as much as I do for my mom.  She's wrong!  She only knows people who are worse than her.  She calls herself a Christian woman yet act like the devil.

Edited by miracleseeker
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Genden, thank you for your candid comments about your caregiving journey.  I see much similarity with what I am now doing

to keep my husband at home. He spends most of his day watching TV, not interested in much else, is lapsing into psychosis,

and I finally decided I needed to get some help.  I now have a caregiver coming in for 2 hours at a time 3-4 times a month so

I can take care of other things and just get out of the house.  I am doing everything I did before and now all that he used to

do, and it is draining and stressful. But you've been at it much longer than I have, so I have a pretty good idea what you're

dealing with.  Please find some time to take care of yourself so you have more strength and energy to continue your

caregiving job.

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I feel each and everyone's pain as I am going through it with my mother for the last three years and it feels like forever and am desperate as am the only child and her primary caregiver. She developed symptoms around the time of my father passing away but were not conclusive until she had a fall. Fortunately she was diagnosed with early stage and is on 1/2 tablet Syndopa TD but has over the last year developed mood changes, paranoia and a form of dementia making it difficult to talk with her and she is very stubborn which is the total opposite of her before.

Am married and my husband has been diagnosed with CLL which is at zero stage. He is retired now and both of us spending most of my time in Asia with my mother and have to fly back for about four months annually for my husbands tests to be done. This is tough as when am with her am already drained at the end of the day and am aware of neglecting my husband and myself in the process. So for over an year now have a nurse aide with her 24 hours daily to take care of her needs and exercises which she is very reluctant to follow.

I find that I am neglecting myself though I now that I need to take care of myself and getting annoyed and feel drained by afternoon. Am worried that I may miss out on doing stuff for her and feel guilty that by going out of the country am neglecting her.

 

 

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When I was younger this never occurred to me that my mom would get old and sick and I would be taking care of her.  I'm the youngest of 4 children so I always thought my older siblings would do most of the work.  I feel like an only child but never had the expectations of doing the work as if I am.   My sister said she felt guilty for neglecting her husband during a stressful time for him at work.  I don't know what she isn't doing for him being that she is not here with us, does not have to work,and her kids are grown and out of her big house. 

I finally went to my doctor yesterday to get  a refill of xanax for calming my nerves. She felt a growth in my abdomen and told me to get an ultrasound right away.   Well if she feels it then it's probably there. Now what?   Surgery??  Who will take care of my mom during recovery?  I can't count on family to help me so the burden is on me.  Yes being a caregiver is the ultimate sacrifice of our existence in this world.  Was I born to have no life and do this job until I'm disabled and alone?   I get so angry when new forum members who are recently diagnosed post that we don't know what we are talking about and we should basically shut up and go away.  Who will spoon feed you and change your diaper when the time comes?  Again this may not happen for most people for a very long time to come but when it does someone will have to do it.   CG's do this and then who returns the favor to us?  

Silent55 -  please keep posting.  We feel your pain and we are here to listen.   Vent vent vent.  Take care. 

Edited by miracleseeker
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Silent55, I totally understand you post, sorry you are in this position. As miracleseeker says, keep posting. We are here to lift you up. We know the cost of PD to our loved ones only too well. Take care of your health especially. Hope to see you on here again!

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Silent55: I have been told that if I don't take care of myself, I can't take care of someone else.  It is hard to do.  Don't feel guilty for taking care of your needs and your husband's needs.  We have to prioritize because we aren't capable of doing everything.  I am sorry you are feeling so exhausted.  Do the best you can and don't beat yourself up over what you can't do.  Sounds to me like you are doing everything you can for your mother.  

Miracleseeker: I am so sorry you are having health issues.  Get the ultrasound.  Don't cross any bridges before you need to.  You may not need surgery, so no need to worry unnecessarily.  I wish you the very best.  Please take care of yourself.

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