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jehallows

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Hello everyone. I've just joined this forum and I'd like to give a bit of my background. My wife of over 45 years has had PD for 18 years. She's now totally dependent on me; I'm her sole caregiver. The changes were gradual, but unstoppable. I now handle all the housework, the shopping, the cooking (even outside barbecue season), and I have to keep her safe, comfortable, and, because she's aware of her condition, I have to ensure her that I still love her. I have no specific issues to present here, I just wanted to introduce myself. I will say that my years of caregiving have taught me a lot and I hope that I can share some of the things I've learned and I hope that, in the coming time, I'll get to know you. I have found out that even if I could do this alone, I'd rather not. Even though the people I've met can't pitch in and help, their support and advice is welcome. Thank you for letting me take part.

 

Jolyon Hallows

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Hi Jehallows and welcome!

 

I am my husbands sole caregiver too, a journey that is beginning its 26 year, and I too do it all now, just comes with the progression.  Your support and advice will always be welcome here, we learn from each other, and even after all these years I am still learning, and hope always to learn.

Again welcome and please come often, there is strength, courage and support in numbers.

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Seems to me that you guys have been dealing with this for some time now.. So I am looking for some advice or whatever..

My Dad has been diagnosed for some time I believe its 13 years now but he has Dementia with the diagnosis.. Recently he fell and got a pretty good goose egg on his forehead, he was taken to the hospital and they saw a small brain bleed but he was observed and sent back to a nursing facility. Since all this has happened he has had all kinds of difficulty. He does not want to eat much, if he eats at all. He has been in a wheelchair for awhile now and has to be fed. His liquids are thickened due to his choking. He still talks but its very hard to understand him, as his speech is slurred and very soft. He knows who the people are that visit him regularly but is not sure of others. He has told me on numerous occasions that he will not be here much longer and there might not be a tomorrow. He is in a lot of pain, all over his body.. He has lost 10lbs in a few months time and for the year its a total of 30lbs.. You can see his ribs, shoulder blades, and just does not look like himself. My question is this the end stages and does anyone else deal with the same things..Yes my Dad is in a nursing facility because I have a number of teenage kids who do not always get a long and 2 dogs who bark a lot and I do not believe he will be comfortable at my house..Hope someone can help me here..I want to know what I am seeing and no one else will tell me the honest truth...Most of the nurses say this is him..this is who they know..but I do not see this..I mean even his bad days are good ones to them..just really confused here..

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Hi Lovingdaughter,

Boy this sounds hard.  Slow weight loss is so distressing to see.  A few thoughts: was the move to the facility in the last few months?  If so, have his meds changed?  They may have put him on an anti-depressant that is too strong, or conversely he may need to be on an anti-depressant.  Any change in the enviornment is hard to get used to, it unsettles us all.  PD is slow and progressive, it could be the disease, but it could be the change in living circumstances.  So ask about his meds, talk to the social worker at the facility and share your concern and confusion.  Another suggestion is to enlist his grandkids.  You mention elsewhere you have 6 kids, twist one arm a week and drag a different child with you every week for a visit.  They may complain bitterly now, but will be thankful in a few years when they get out of their teen sulks.

 

Sorry this is not much help, but PD is so hard; what is the disease and what is something else.  It's really difficult to watch or know for sure.  All you can do is keep on keeping on.  Good luck.

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Upper Midwest,

 

He has been on anti depressant for years and the move was over 2 years ago.. I have asked everybody in the facility about his meds and they say nothing has changed, the only thing that has is that he was removed off of blood thinners because of the lastest fall caused a small brain bleed but I have been told that has healed itself.. He is on a lot of pain medication because he is in a great deal of pain.. Everyday I give him a massage which he seems to enjoy, he extends his neck and back, like a cat..kinda cute.. I have been trying to enlist all kinds of people to visit him and finally one of my daughters did today which she said he smiled and waved at her.. so that is good but he was complaining of a headache today.. There are 7 of us kids with me being the youngest of them all.. My full brother goes with me quite often and a sister goes and sees him as often as she can, she lives a long way from us.. The others, well thats another story.. 4 of my children go with us every Sunday, and another one wants to but thats a whole other issue.. Anyway, I thank you..I just can't get any answers I just want to know that I am not crazy.. I was a Certified Nurses Assistant for 7 years, I know the signs of decline, but the people there don't see it.. I always did..Anyway, thanks again

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Hi lovingdaughter and welcome.

 

I would like to offer you some suggestions, and I think it may help you to figure out some things.

 

If you can be there at the time your dad gets his medications.... is it the correct time.  Check each pill that he is given, ask what it is for, and is it the proper dosage. 

To often medications are changed and the family is never informed that a doctor has changed any orders

If you can be there at meal time, how much is he getting to eat, is he getting enough protein and fiber in the diet.  Is he eating everything on his plate.  Does he get snacks that he can eat during the day. 

 

How much water is he really drinking during the day, can they tell you if he has a good urine output.  Has he been checked for UTI's, is he dehydrated.

 

When thick-it is added to liquids, it doesn't taste good.  Pureed food changes the texture of food, and if your dad can't taste or smell all his senses for eating rely on the texture of food.  A discussion with the dietitian just might help.

 

The weight loss that you speak of.......that is a little to much weight loss and can lead to more problems.  Perhaps it is time for a family meeting with the facility where you express your concerns and involve the PCP too.

 

As for if this is late stage of not.  Address all the above concerns, and use your eyes for documentation, that will tell you much, and you don't need to tell them you are coming, just drop in.  Listen to your dad's words too, they are just as important as anything else.

 

If I have learned anything in all my years with PD, there are good days, there are bad days, and even worse days.  It is hard to know when the end could be close, and you don't say how well they monitor his over all health.  Facilities are very good at saying their patients are fine when they aren't, they don't have time, or take the time to really pay attention to their patients, much less really get to know them.  This is where you as a caring daughter need to step in, and start expressing your concerns, check up on them, and just don't take anything they say at face value.  Express your concerns with the pcp, and any other doctor involved with his treatment.  Demand some changes if you have to, they get paid to provide proper care.

 

As a CNA for 7 years I think you already know the answer, go with your gut, don't let anyone make you question what you know in your heart to be true.

 

We will all be here for you if you have more questions or just want to rant.

 

Sorry for the way this was put together, I just had one of the worst days, but I didn't want to wait to respond to you.  We all need to know that others care.

 

Stay strong and again welcome!

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Excellent advice, TH.  All of it. 

 

And lovingdaughter, remember that you are paying royally for a service, and if the nurses/physicians/staff are not adequately answering your questions, and you feel they are not addressing your dad's needs, they are not doing what  you are paying them to do.  You have recourse, like speaking with the head nurse and your dad's physician directly.  There should also be a patient advocacy department that can assist you and step in for you.  You can go to the CEO, if necessary.  Don't be intimidated.  Be heard.  It's not always easy to do that, but it really can make a difference, and often people need it in order to see that they really do need to do something to address concerns.

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Thanks all..

 

My Dad has had 1 good day and several bad days, even with mood swing... He has been checked for a UTI and all is fine on that level.. As far as what he is eating I tell ya it is not very much..started going twice a day lunch and supper..and still the same thing might take a couple of bites for lunch, usually its something sweet and might drink a shake supplement.. supper really nothing is ate and last night he even refused the shake..he does not drink very much water due to the thick it I believe but trying to get something down him a little thick it is put in the water and he will drink a little of it but I tell him and limit how much he gets at one time because I do not want him to choke.. I have been there when they give him his medicine during the day they crush it and give it to him and at night they just give him the pills whole... So today I took things into my own hands..There is one nurse who tells me like it is and does not hide anything when she is there, so I asked her what can I do to talk to his house doctor, (he does not want a different one and if he could get by with it he would not have the one he has), she asked me why.. I told her I had a lot of questions, for example; his medication..is his medication working, is there too much, can the medication side affects be making things worse..then I told her that I wanted to have hospice come in and evaluate him.. so she called the doctor and put a message in that the family wanted a medication review and a hospice consult... if this does not work then I will probably make my Dad mad at me and get a second opinion.. Something deeper is going on... He told me today that he can take pills at home and feel like cr**.. Found out today that just cause my brother is 1st on the DPOA does not mean that I could not request things since I am 2nd... If my Dad is in the last stages I am ok with letting him go but I want him to be comfortable and not in so much pain that he tells me he wants to die... He told my brother that he such a big problem for everybody..and we reassure him that he is not and that we love him.. I have already told him that when his time comes that he can go that we will be alright.. I have told him thank you for raising us, that he is the best Dad in the world..and that I was sorry for all the hardships I caused him when I was a teenager.. I just want him to be comfortable..

Thanks for all your guys help.. I did find a group that helps with the Dementia side of things but there is no place for the Parkinson side... except for you guys...I really thank anyone and everyone who listens (reads) this and all of you who responds... I am just focused on getting answers and making my rock, my everything comfortable... because that is what he has done for me and he would do for me... 

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... So today I took things into my own hands..

.. 

 

That's good to hear.  Answers to your questions are always better than waiting and worrying more every day.  Let us know how the review went...

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Thanks all..

 

My Dad has had 1 good day and several bad days, even with mood swing... He has been checked for a UTI and all is fine on that level.. As far as what he is eating I tell ya it is not very much..started going twice a day lunch and supper..and still the same thing might take a couple of bites for lunch, usually its something sweet and might drink a shake supplement.. supper really nothing is ate and last night he even refused the shake..he does not drink very much water due to the thick it I believe but trying to get something down him a little thick it is put in the water and he will drink a little of it but I tell him and limit how much he gets at one time because I do not want him to choke.. I have been there when they give him his medicine during the day they crush it and give it to him and at night they just give him the pills whole... So today I took things into my own hands..There is one nurse who tells me like it is and does not hide anything when she is there, so I asked her what can I do to talk to his house doctor, (he does not want a different one and if he could get by with it he would not have the one he has), she asked me why.. I told her I had a lot of questions, for example; his medication..is his medication working, is there too much, can the medication side affects be making things worse..then I told her that I wanted to have hospice come in and evaluate him.. so she called the doctor and put a message in that the family wanted a medication review and a hospice consult... if this does not work then I will probably make my Dad mad at me and get a second opinion.. Something deeper is going on... He told me today that he can take pills at home and feel like cr**.. Found out today that just cause my brother is 1st on the DPOA does not mean that I could not request things since I am 2nd... If my Dad is in the last stages I am ok with letting him go but I want him to be comfortable and not in so much pain that he tells me he wants to die... He told my brother that he such a big problem for everybody..and we reassure him that he is not and that we love him.. I have already told him that when his time comes that he can go that we will be alright.. I have told him thank you for raising us, that he is the best Dad in the world..and that I was sorry for all the hardships I caused him when I was a teenager.. I just want him to be comfortable..

Thanks for all your guys help.. I did find a group that helps with the Dementia side of things but there is no place for the Parkinson side... except for you guys...I really thank anyone and everyone who listens (reads) this and all of you who responds... I am just focused on getting answers and making my rock, my everything comfortable... because that is what he has done for me and he would do for me... 

 

Lovingdaughter, have you perused the Parkinson's Disease Foundations website?  It may be helpful.  They also have a call line that may be well worth calling.  They state that if they can't help with a question, they will find or refer you to someone who can.  http://www.pdf.org/ask_expert.%C2'>

 

God bless, and please keep us updated.

 

Linda

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Lovingdaughter

 

You stated that he has dementia, is it PDD or LBD or is it a cognitive problem, there is a huge difference between the three.  The fact that he knows some and not others may not be because of dementia, but because of name recall with the cognitive problems that come from advanced PD.  My DH has cognitive problems, but for awhile was stuck with the LBD diagnosis, until I got the neurologist to slow down, and give him some time to process.  They have since removed that diagnosis.

 

The nursing home is not doing their job if they are not making sure he is getting enough nutrition, from what you say he will continue to loss weight, and no one needs to tell you where that will lead. 

 

If they give the pills whole at night and he does swallow them then perhaps you should try small sips of liquid without the Thick-it.  My DH who everyone claims is at end stage PD can still swallow liquids on some days without the Thick-it, other days he requires it.  That is not something that a nursing home will even pay attention to.  If the risk is that great for choking I would be furious that they can't even take the time to crush pills.  The other thing, the pills that they crush, are they pills that can be crushed?  Sinemet crushed from my experience should never be done, a reg sinemet can be broken in half, but not crushed, though some of us have to in order to get it down.  Perhaps a switch to the new Rytary is in order.

The pain that he is complaining about needs to be addressed, there is no excuse that anyone should have to be in so much pain that they would choose death as a way out.

 

You have it together loving daughter, you just keep following your instincts, and perhaps these problems can be resolved.

 

I do have one more suggestion for you, but do not know if you can or are able, but here goes.  Are you able for just one day  to take your father to your home, or one of your siblings just to see how he does?  There is a possibility that he is simply depressed, or he may feel he is just a burden, and by taking the time to get him out for a day sends a huge signal to him that he is not just a burden, but still part of a family that does still love him.  Words are wonderful things, but actions some times are a greater signal.

 

Stay strong and we are all here for you when you need us.

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Lovingdaughter,

 

I can sympathize with your situation.  My mom also has dementia (although not officially diagnosed) with the PD and also continues to lose weight.  She is at home so I am able to monitor everything along with her daytime caregivers.  She usually eats a good breakfast but lunch and supper are hit or miss.  It is a good day when she has one decent meal besides breakfast (and by decent I mean 1/2 of a chicken salad sandwich).  Often she will just have a few bites and be done.  Thank goodness for supplemental nutritional drinks.

 

In her case there are times she just doesn't seem interested in eating, sometimes she can't open her mouth, and sometimes she is a zombie and can't move.  She can usually swallow fine (although it seems to be more difficult when she is tired) so we have not had to resort to Thick-it.  During those difficult times, we try to feed her.  Sometimes we are successful and there are times it just takes her a little while to get moving and she can eventually finish the meal herself.  It isn't unusual for it to take her 1.5 hours to eat.  Does the nursing facility give your dad adequate time to eat? Or are they able to offer a shake in the middle of the afternoon?  I too have wondered if lack of appetite is somehow related to my mom's medication but have finally decided that it is just the course of the disease (and of the dementia).  It is a feeling of helplessness, isn't it.  I feel like I am watching her die ounce by ounce.

 

It is good that you are trying to be as involved and hands-on as you can so that you know he is getting the best care.  Another alternative to consider is a feeding tube.  My mom had one inserted a little over a year ago but it turned out her eating problem at that time was due to too much medication so we had the tube removed after one month.  She hated the tube but some people might be ok with it.

 

The pain your dad is experiencing and generally not feeling good is a different situation and is something that should certainly be checked out.  Hope you find some answers.

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It is a very difficult situation... The nursing home provides enough time.. its not them.. It's my Dad he is just not interested in eating anymore..except for those wonderful mighty shakes.. he loves them... A feeding tube is a form of life saving measures and he signed a DNR some time ago...So we have declined it and appetite stimulants.. We are now in the place that this is a natural progression.. It is getting harder and harder for him to swallow, he chokes on anything now... Even on a puree diet and thickened liquids.. He also has GERD which causes him to aspirate at night.. A week ago I really thought my Dad was going to pass because he was having a hard time breathing, could not drink through a straw, and could not talk, (could not move his mouth to form words and we could not hear him)... The nurse and aides raised the head of his bed, which he did not like, and checked him out thoroughly.. He declines more and more everyday.. 

 

Now some of my family is causing problems about final plans.. making my brother and I worry about other things.. We thought everything was all setup and ready but family has to ruin things.. There are 7 of us kids, 6 of which can do things for him and each other but only 3 of us are doing anything.. 

 

Last night Dad did not want me to leave and I had to because I run my own business and there was no one to take my spot... Anyway, He was approved for Hospice and Dad does not remember much from one hour to another, exhibits some behaviors which I can deal with coming from training I have had... 

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Hi, Lovingdaughter.  I am very moved by your post and can empathize, having lost my dad three years ago to similar circumstances, but without the added issue of the dynamics you are having with your siblings.  You are doing such a good job and obviously love your dad very much.  I just want to encourage you that you will find hospice a wonderful help both to your dad and to you and your family.  Will you all be meeting with them?  It would probably be a great benefit to do that so that communication is given to all and also to help with resolving the disagreements. 

 

We found that they checked in on my dad a few times and day and also communicated with the nursing station, of course. They'll make your dad comfortable so that he doesn't suffer by providing oxygen and pain medication.  They may also have volunteers who have gone through what you are who can come sit with you and your dad and can be with your dad when you and your family can't be with him.  And just like here on our PD forum where we gain so much comfort and strength from each other because of experiencing and understanding the difficulties we go through with PD, you'll find that same strong connection with those who have been through what you are going through now.  I can't speak more highly of our experience having had hospice come in.  We were very fortunate to have access to one that is extremely well thought of, and I pray that you'll have the same experience.  I'll pray for you right now, and if there is anything I can possibly do--or if you just need to chat--please feel free to PM me or post here as often as you need to.

 

Take care,

 

Linda Garren

Edited by Linda Garren

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LovingDaughter,

I am so sorry, I know how hard this time can be.  I wish there were words to give comfort and make it any easier.  I spent a certain amount of time in my life obsessively playing Clapton's "No More Bad Love" on the few breaks I got at the end of a parent's life.  It helped me keep it in perspective and look to the future good.  Terrible place to be stuck in. 

 

My thoughts are with you, and hope you can find some relief for that helpless feeling.

 

eta: keep the shakes coming.  He may enjoy getting them as much as sipping a little from them.  And it's a positive action....

Edited by Quietstill

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Lovingdaughter

 

You are in my thoughts and prayers during this difficult time for you and your family, it is never an easy decision, but it is one we all face at one time or another.  One of the most difficult times of my life, yet one of the most treasured is being with my mom as she took her last breaths. 

 

Please let us know how you are doing during this very difficult time. 

 

Stay strong

Edited by Trying hard
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Thanks so much you all... and I treasure each and every moment... I have spoke with hospice a few times and my boyfriend stepped in and got a phone number that I was desperately searching for a family member who solved all the problems with final arrangements.. So that is solved.. We are not sure what each day brings us but we just want to be prepared.. Dad seems to be taking us on a roller coaster ride and I was never really fond of those rides so I am having a difficult ride and would like to get off but I cannot because then I miss out on the wonderful moments when Dad is making sense and is happy but I hate the moments when he just looks completely down right awful and can have quite an attitude..but I do love my Dad with all my heart and soul and he is the foundation to who I am.. I am very proud to be the baby girl of my Dad's and I treasure that place in my family because he has made it so special.. I still act as I am the oldest :) Anyway just wanted to say thank you so much for the support... 

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lovingdaughter

 

Enjoy each day as it comes, treasure the good moments, and  forget about the bad.

 

I will be thinking of you in the days that come, and please let us know how it all goes for you.

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Well we have got things situated for the final details that will need to be made... Dad is still not eating very much and he did choke this weekend but seems to be fine.. Just tonite he told us to sell his cars to bury him, although he has no cars.. We just try to move forward with the conversation.. One of my older brothers came and seen Dad but did not stay very long and Dad did not know who he was at first but soon did, after I told him... I let my brother try to get a connection with him although Dad did not seem to care.. I was a good girl though I did not want to be..but I do not want Dad to get upset..  I been going to see my Dad alot more over the last month and half than I had in the past and for the first time he had trouble going to the bathroom #2 and to have help.. 

 

I spoke with the Social Worker from hospice the other day and asked some questions about prognosis, as he has been on hospice before and gets better so they take him off, I really want to know their thoughts on the situation, and don't you know they cannot give me a direct answer instead they give me booklets.. Well I know the booklets forwards and backwards.. I really want this to be over.. for my Dad's sake.. I love going to see my Dad and just sitting there, sometimes he don't mind me staring at him but other times he wants me to leave.. then other times he wants me to stay but usually I cannot stay I have to leave and take care of my kids.. I am very tired..sometimes I sleep good but most of the times I sit up waiting for that phone call, cause to me he does not look good at all and I have a feeling that my Dad will be different from what I have read and know.. Just really tired, confused, irritated, and lots of other emotions that I have not felt in a long time.. One more lesson he is teaching me in this life... I cannot control everything and I must come to terms with that...  Anyway that is an update.. 

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I I am very tired..sometimes I sleep good but most of the times I sit up waiting for that phone call, cause to me he does not look good at all and I have a feeling that my Dad will be different from what I have read and know.. Just really tired, confused, irritated, and lots of other emotions that I have not felt in a long time.. One more lesson he is teaching me in this life... I cannot control everything and I must come to terms with that...  Anyway that is an update.. 

I'm so sorry.  That is so hard and exhausting.  The only thing to say is that eventually the situation will end, yet life will continue...

 

Take care of yourself, you are in my thoughts.

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