For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Dealing with Decline Go to previous topic Go to next topic Go to higher level

By searchlight On 2011.09.14 03:21
In my previous post concerning my father, I talked about an insurance nightmare running out of Medicare days for an SNF, and dealing with a secondary that initially refused to cover an additional 30 days despite meeting their requirements.

Now I want to discuss a dreaded word that I think in terms of coping and/or hoping may be just as bad as saying one is terminal.

My father's geriatrician, on three occasions, has referred to my father as declining since his severe bout with sepsis because of his uti, and pneumonia supplemented by his hip fracture experience.

He is not on life support or in a coma at the moment. However, he lost a lot of weight because of the infections, and lack of eating, and cognitively, is not as alert and/or responsive as before. Moreover, the doctor did mention that these type of infections plus the fact that my father recently suffered a hip fracture sets back a Parkinson's affected individual many steps.

The point is that I am fully aware of what is happening. However, because of the word "declining", I go to sleep every night waiting for the final call because this is a slow process. As one nurse tried to tell me, I should just take one day at a time. She added that in the SNF, they had a patient on hospice for two years, who then walked out out the SNF. The point being that there is always a slim chance but because of the repeated use of the word declining, I feel as though my father and myself, are now deprived of that opportunity.

I would have appreciated the doctor having said that my father has experienced a severe setback, and that we will just take one day at a time, and see what happens. I think, had she used this type of phraseology, I would have been better able to cope with his situation rather than be consumed with "the final call" and "final arrangements".

Unfortunately, my mother has Alzheimer's, so I cannot discuss this with her, and people I know can only offer sympathy, so I carry the burden alone.

Maybe I need to be more realistic?

By susger8 On 2011.09.14 07:50
There is no way of knowing the course of this disease, as we all have found out. But I would encourage you not to give up hope. My dad lost a lot of ground when he broke his hip too. Although he did not have an infection, he lost a lot of weight, obviously was much less mobile for many months, and permanently lost some mental function. But he did regain both the mobility and weight in less than a year. Physically he is pretty much at the same level as before he broke his hip. So it's not impossible to recover. I hope that your father also recovers.


By karolinakitty On 2011.09.14 08:57

If we listened to and followed all the talk of "declining, progressing, stages" involved with this disease..hope, happiness, life would be words that never get used.

I believe you said your father was around 90, what an awesome life to begin with. If we, at diagnosis only being 50, had given up and given in to the fact that they said his life expectancy being 3 -5 years, I would not be typing this and saying these things to you. We would be sitting here still, awaiting the grim reaper. Even though we have put all our ducks in a row, made final arrangements, talked of wills, POA's and guardianship...we won't let the words of others, the attitude of doctors put us in the mode of death camp.
we have proven them wrong already and you just have to push harder. It seems like your father is not ready yet..if he is pushing then there is the very good chance he will recover. We just have to take it as WE see it and not some stranger following charts and graphs...

1% ...a tiny little number.....but there is that 1% always and forever..if you are that 1 out of awesome....that is the hope you look for....

By RhondaM On 2011.09.14 10:38
I don't post much here but I do come back and read all the time and post when I think I have something helpful to say. I lost my dad to PD in 2003, and then I lost my mom to cancer last year and I was her fulltime caregiver for 10 months at her house and then at mine. Even though she was dying of cancer, I do believe I saw some clear signs of PD in her, and I know PD from seeing it my dad for 20+ years. Anyway, she was put on hospice immediately after he diagnosis because the cancer was in her pancreas and liver and uterus, and she was 87 at the time and very weak with heart issues and just could not fight a battle that was destined to lose anyway, so I heard that dreaded word "Hospice" concerning my dear, sweet mother whom I was so devoted to and loved so much. However, hospice turned out to be such a blessing. The fact that she was on it for 10 months made it more so. She got to know the nurse, the CNA, the chaplain, and the social worker as friends. I no longer had to haul her around to doctor's offices, they came to her at home, and delivered her meds at home. It made is so much easier to care for her. I believe her best time in her last 3 years were those 10 months on hospice because they took care of EVERYTHING. If she got a UTI, or a sore throat, they'd get a prescription right out to her and monitor her. She suffered a mini-stroke late in her illness and they came right out and saw her on a Sunday afternoon. They provided 2 massages per month for her, which she dearly loved, and one per month for me as a caregiver, which I dearly loved, too. I became close friends with these dear people from hospice and am still friends with them today. Her nurse and I have lunch together once a month. What I'm saying is that we fear and hate the word hospice because of what it means to us, but they can make that time so special and comfortable and take care of so much for you as the caregiver. You have an ally you can call 24/7, and meds in the fridge that you can give to ease pain. No more clumsy trips to the doctor and waiting for hours, which my mom hated. She had a great attitude and she loved hospice. They brought out all the equipment she needed right away, oxygen, bedside table, bedside toilet, hospital bed, and eventually Depends. I was no longer on my own and having to make scary decisions and worry, I had someone to call at all times. At one time my mother seemed to be doing so well, they mentioned her getting off of hospice for a while and then getting back on and I didn't want to hear that. I didn't want the whole caregiving back on my shoulders again, and I'm glad that never happened because I depended on them for their visits and help, and they made my mom's last days so much better. I feel sorry for people who don't get to spend a long time with hospice because they miss out on so many blessings that a long-term relationship can bring. These people grieved with me when my mom passed peacefully, and they came to her funeral, and the chaplain spoke at it. These were people who truly cared and loved her, and vice versa.

So don't fear the word hospice and what it means. If your dad is declining at all, and at his age, you know he doesn't have years and years to go, then let hospice come in and make his life better, and he may have his best days yet to come. They aren't going to come in and make things worse, they will make things better and keep him happy and comfortable to the best of their ability, and if something else crops up that makes him sicker, they will tend to it. I don't know what people have in mind when they hear hospice, I know it was terrifying to me and I dreaded it, but when I look back now in hindsight, I am so grateful for them and so glad that my mom had them for 10 months. I only wish my dad had had them, too, but he passed very quickly from aspiration pneumonia, but if I had known then what I know now, I would've had hospice come and help him those last few months of his life when he began to fall and have dementia and exhibit signs of decline.


By lurkingforacure On 2011.09.14 16:42
You are in a tough spot and I was just there this summer. My mom was declining and continuing to decline in a SNF. She fell and hit her head twice in about a three week period and also had three UTI in about a five week period. Her SNF was wonderful but my mom was declining and I didn't want to see it. Hospice referred to it as "terminal decline" and they were right. I posted here about my mom's passing so no need to repeat it, but you do need to be realistic and prepare for every contigency. Doing so will have a much better chance at having no regrets later, because you will have done things as if your dad was leaving you, and if he does, no regrets, and if he doesn't, what a bonus!

I did this and have very few regrets, and I also have the comfort that I really gave my mom a lot of time and love when she probably needed it most. It was really hard, as my husband has PD and we have little kids, but I made time for her and saw her every day, took her for walks, brought our kids and her dog to her in the SNF to visit, all of that. It brought her joy and happiness and I will always remember her beautiful face lighting up with joy when her grandkids walked into the room or I brought her dog to see her. So very grateful I did all of that.

As I read somewhere: Prepare for the worst, and hope for the best.

By searchlight On 2011.09.15 00:16
Thanks for the kind and supportive replies but I did consider hospice but the way that the doctor presented it to me was that I had to agree that he had 6 or less months to live, and that they would not do anything for him if something new developed. That being said, being that he is "declining", why would I want to hasten his demise any further or faster?

Moreover, as Medicare is my father's primary, they do not pay for room and board, and in my father's current state he needs the 24/7 that an SNF can provide.

For some who can afford Private Pay, I admire you but I cannot at this time so I am at the mercy of Medicare, a secondary, and hopefully, I can apply for Emergency Medicaid to insure continued care after the 30 days of Secondary Insurance coverage expires.

By lurkingforacure On 2011.09.15 22:49
I was told my mom could only stay in the SNF IF she was able to do the physical therapy and was improving. And even then, Medicare only gives you 20 days, after which you have a copay until day 100, and they you have to pay 100%.

I was looking into having to get 24 hour care from an agency or individual caregiver and then have hospice come in on top of that the three times a week they would come in. It is expensive, but what I was told is that once your 100 days are up that Medicare allows in the SNF (and of that 100 days, you really only get 20 paid at 100%) you either have to pay 100% to stay in the SNF or you go somewhere else (in our case, we were going to bring my mom back to her house, where she wanted to be) and get a caregiver to come in 24/7.

You may want to make sure your dad can stay at the SNF, for how long, and on what terms so you dont' have any surprises down the road. In my case, they told me that my mom could not do the PT anymore and that she could stay at the SNF but that we would have to pay 100% even though she was still within the 100 day timeframe. I think the idea behind the SNF is that they have to be improving, which includes being able to participate in the PT program, and if they can't, then Medicare no longer will cover any part of their stay in the SNF.

By searchlight On 2011.09.16 02:46
My father used up his 100 days between the two SNF's, so I had to fight to have his secondary exercise a 30 day SNF benefit after Medicare is exhausted, that they originally refused to do.

Unfortunately, because he is unable to return to the community for 60 days as Medicare requires, my father cannot renew his 100 SNF days, so I am forced to apply for Medicaid to try to get him more coverage

By searchlight On 2011.09.16 02:52
Regarding hospice, Medicare does not cover Room and Board in a facility. Moreover, his doctor told me that if anything new developed, hospice would not address that issue, only tend to current conditions.

For those of you who can afford Private Pay for your loved ones, I admire you.

Unfortunately, it is a very expensive enterprise that not everyone can afford, so one must make do with what the "system" can provide.

By RhondaM On 2011.09.16 11:08
My mother was fortunate and blessed to be able to stay home until the very end with me as her caregiver and Medicare covered hospice 100% for the 10 months, so it was very different. As for what hospice did for her, they could not "fight" the cancer, only treat the symptoms and make her comfortable, but when she developed a UTI or other infections, they dealt with it and got antibiotics for her. They sent her to a dermatologist for a skin cancer on her ear that was bothering her when she laid on it. That was above and beyond hospice and my mother's Medicare and supplemental paid for it. So they did address other issues that came up and took excellent care of my mother and took a lot of burden off of me on whether something needed medical attention or not and running her to the doctor when she didn't feel up to it. My mother also suffered some blood clots in her leg that they addressed and treated that were secondary to her cancer. Hospice was a blessing and the people were angels. I just don't want people to turn hospice away for fear of what it ultimately means when it can be a true blessing to the patient and the caregiver. I am sure there and good and bad ones, but I was blessed with a wonderful one. I only wish they could've been there for my dad in his last months, even though he was in a wonderful nursing home, he could've benefitted from their care and spiritual/emotional help.

By Pearly4 On 2011.09.16 17:03
It has been a while since I had to deal with the financial complexities of getting care but my mother was able to qualify for a Medicaid ancillary program which paid for "near nursing home" care for the Frail Elderly. The client first must qualify for Medicaid then is qualified into the Frail Elderly program. This program covered expenses to keep the qualified patient in the home rather than a nursing home. Once in the program a case manager is assigned who visits with the patient and family, evaluates needs, and based on a specified monthly allottment to pay for care which can include 24 hour care if deemed necessary. The sum of money is not endless - even the number of patients qualified for entry into the program is limited by budgetary amounts. If you haven't contacted your state Social Services office, perhaps working with the Social Worker in the nursing home where your father is, you can get some information.

As if battling this disease weren't enough, battling the financial aspects of paying for care is a nightmare!

By searchlight On 2011.09.17 03:30
My father is still not eating well. They started him on Megace a few days ago. I spoke to his doctor today, and she suggested indirectly that I should consider a DNR in accordance with his Advanced Directive stating under certain conditions, that he did not want extraordinary measures taken to prolong his life.

I never signed one because up until three months ago, he was in reasonably good health, and I always felt that by signing one, I would be depriving my father at another chance. I realize that CPR efforts are traumatic but I am torn.

By RhondaM On 2011.09.17 12:14
Believe me, I understand your being torn and the emotions that these things bring forth. I felt the same way when my mom had to sign her own DNR to be admitted into hospice. I had a lump in my throat the size of Canada. But my mom didn't flinch, she said, "Oh, I definitely don't want to die but once." She had a great attitude through it all and was ready to go, it was me who wanted her to stay, but at the end, I, too, was ready for the suffering and waiting to end for her sake because she was miserable, unable to walk, very confused, just ready to be released from this world and frail body. There is no way I would have wanted my dad or my mom to undergo CPR in their conditions and deprive them of their spiritual reward, but still, it tore at my heart.

My mom took Megace for the last several years of her life, otherwise she had no appetite and was wasting away. It worked wonders. I hope it helps your dad.

All I can say is think about your dad, your spiritual beliefs, his beliefs, his readiness, and make the best decision for him.

There was a time when my mom was very ill with pneumonia and almost died, and the nurse at the hospital asked me to consider a DNR. I vehemently opposed it and would not consider it, she was only 83 and I knew she had many more good years left if we could just beat that pneumonia, and we did. However, 5 years later when the cancer was so advanced and in major organs and they could not do anything for her, I finally admitted it would be cruel to try to keep her here to suffer longer, yet it still made me almost sick and very, very emotional to see her sign that DNR. It is never easy to give up your parent, you are never "ready" but it is possible to be prepared, and I know in both my parents' cases, it was a relief to see their suffering end while missing them so much it hurt. I still miss them, but I don't have regrets.

God bless you.

By searchlight On 2011.09.17 13:03
RhondaM, I appreciate your comments and understanding. What really has given me difficulty in coping with this whole situation is that my father fell, and fractured his hip while under a nursing home's care. Had this not happened, he might have had two, three or more years left because of the PD but now we will never know.

Consequently, when conditions deteriorate naturally because of age and complications from disease and/or infection is one thing, you do not want it to happen but you must try to cope.

However, when it is forced upon you, too soon, and too fast, it is hard to believe, and hard to accept.

By lurkingforacure On 2011.09.17 13:21
Hard facts about DNR:

This made is easier for me to accept a DNR. The emergency room staff, including doctors, told me that DNR in elderly are risky because they can break ribs, which can puncture lungs, and often the electrodes they may have to use can cause burns on their thin skin. I was also told that the success rate, for lack of a better term, was about 50.50, in my mom's case, it would have been much less as she was nonresponsive when she went in.

It is horrible, my mom was only 76 and I too felt we had many years, even decades, before I had to deal with anything truly life-threatening.

If it helps, my mom fell in the SNF as well, and hit her head on the back of it. She had already fallen before, badly, which was what caused her to be in the SNF in the first place. I don't fault the SNF, though, because I know that in our state it is illegal to physically restrain a patient in the bed and my mom kept getting out, even though the bed was almost on the floor. I tried to explain to her that she could not stand on her own, much less walk, until she got stronger, but she either kept forgetting or was just so stubborn that she was convinced she could.

When my mom was in the hospital before the SNF, they did restrain her in bed and she was beyond miserable. They use huge velcro straps to tie them in and it is awful, they cannot really even turn or shift in the bed. I could not get her out of there fast enough, and was so relieved to learn that in the SNF, they could not do that. They did, however, check on her all the time, but as we all know, it only takes a minute when someone's back is turned for something to happen. She would even try to get out of bed when I was there, and it was really hard to get her to quit trying to get up and about.

At the end of the day, we have to do the best we can with what we have and know at the time, and make peace with that. You are doing a wonderful thing helping your dad and being there for him.

By lvmymom On 2011.09.17 20:53
Hospice: They offer a lot of free services, so welcome them in. They supply medications, hospital beds, bedside aids, nursing staff to bath and feed him and they provide emotional support to you and to him at no charge. They can move your father into your home if you have a spare room, furnish the hospital bed and supplies and full take care of him. They'll help him pass .... (if it takes 2 weeks or 2 years)

Dieing: Again, something you should learn all you can about. It is a huge part of living. I'm sure you want it to be as good as it can be. If your father takes two years to die or 2 weeks to die it is probably something you want to look back on and know you did all you could to make it easy and peaceful. Make plans now about what you will do when he does die. Will you call the funeral home right away or stay with him for a while? Have you gotten to know your funeral director? What plans do you have once he is taken to the funeral home? You have 2 years or you have 2 weeks ... no mater how many days or years you have... work at it now so that his passing is something you can embrace and feel good about. It is an honor to bring life into the world an an honor to be there as life stops.

I always feel it is best to be realistic and knowledgable. No matter what, you have a job ahead of you... First how to take care of him (Hospice is a great help and solution to your financial needs) while he moves on towards the final breath. You'll want that to be as peaceful as it can be for you and for him. Then secondly, how to take care of him after that. Plan now and learn all you can. Be prepared, be realistic and learn all you can. You final gift to your father.

Good luck

By RhondaM On 2011.09.18 12:29
I can relate to you feeling this was thrust upon you because of the fall and broken hip, and without that tragedy your dad would have had some good years left instead of this steady decline, but do you realize how many of our elderly begin their decline by a fall and broken hip? It is tragic and sad and you feel it was unfairly thrust upon him and you, but just like disease jumps up unexpectedly like it did in my mom, something always happens when you reach the end of your life to bring it to a close. Sometimes it is a fall, or a sudden diagnosis of advanced cancer when you had no idea anything was wrong, and it is already too advanced to do anything about, sometimes it is pneumonia, sometimes a sudden heart attack that takes them in an instant, or a stroke that can take them instantly or take them gradually over a year or five years. All of these things have happened to my loved ones over my lifetime when they reached their 80s or 90s, and I had to accept that this was the way they were meant to go, whether quickly or slowly.

I am sorry you are going through this. It is very hard when it is your parent. I have lost both of mine now and miss them daily, dream of them very often, but I was honored to be able to say I was holding my dad's hand and my mom's hand when they took their last breath on this earth, and the last thing they heard me say was "I love you." There is a great blessing in that. And both of them were more than ready to go to their Eternal Home, and I have total faith I will see them again there.

By searchlight On 2011.09.20 04:42
Today, after soul searching, and considering what my father would want, I signed a DNR order.

Like one nurse told me, you know what you currently have. In the event something happens, if your father survived, what could return, would be worse for you, and especially him.

I think she is right. My conscious is now clear.

By searchlight On 2011.09.22 02:49
Yesterday, my father's doctor told me that she thinks he will not last more than two weeks.

In the meantime, within two weeks he will be discharged from the SNF that he is in, so I have to find another facility for him to transition to, should he survive. I can no longer use Medicare because his situation does not fit the guidelines or his Secondary, because they provided another 30 days.

Consequently, I am forced to apply for Medically Needy Medicaid with the caveat that since money from my father's income, there are no assets, will be assigned to the new SNF, whatever will be left over will not be enough to pay the bills. I spoke to several lawyers about what to do if he survives or passes on. If he passes on, they tell me his estate will be responsible for the bills dependent upon what is left. If he survives, that is another story.

One lawyer told me to write letters to my father's creditors, they will be understanding, and forgo his debts. A lot of talk but no clear answers.

By searchlight On 2011.09.22 02:57
One more thing. The doctor is suggesting Hospice again. Since he is a Veteran, she suggested a VA Hospice facility. I spoke to the VA. They told me that I would have to apply, and that the application would be screened by a committee but there is no guarantee that a bed would be available at the time of the application.

If I agree to this, that facility is over 45 minutes away, as opposed to the new SNF, which would be 20 minutes away, and his community doctor would no longer be involved in his care.

Once again, I am torn. This constant swing between living, and dying, and I do not wish or want my father to die, knowing the circumstances is exhausting me.

By susger8 On 2011.09.22 08:03
I believe you can still receive hospice services in a SNF. It certainly makes a difference to be nearby.

I'm sorry you are going through this. My mother was 70 when she died of cancer. I was not willing to let her go so soon. But she made her peace with dying and she told me she was ready. It was still very difficult.


By searchlight On 2011.09.23 01:52
He is not in pain, on machinery, respirators, or in a coma. He is not suffering. The nurses tell me he is eating a little more and cracked a joke.

I am realistic about my father but what is wrong with appreciating life for whatever time it may be. The doctor dwells on his death so much, that I anticipate a call every night, and can no longer truly appreciate the days left that he is alive.

As of now he is still alive.

By monopoly17 On 2011.10.08 17:11
I was reading all your responses. I wish they would put my husband on hospice. He still is able to get up but barely and falls alot. He has trouble eating now also. I've had to feed him. I'm disabled also. Kaiser tells me Medicare won't pay for hospice until he is bed bound or wheelchair bound. I'm so frustrated. I have NO help.I pay for help 3 days aweek and it's killing me finacially.She is only here 2 hours at a time.I've applied for VA and they said we make too much but we are repealing because the dr. didn't make it clear how bad off he was. But it takes FOREVER...Any suggestions?

By RhondaM On 2011.10.09 11:41
That is NOT true about hospice. My mother was not bed bound until the last day of her life and she was on hospice and it was fully paid for by Medicare for 10 months. She remained on ALL of her heart and BP medications, they dealt with UTI's and other infections she got when they came up, they kept her comfortable and saw to her social and emotional and spiritual needs and she had better quality of life those last 10 months than she'd had for the last 3 years because she was being seen to regularly at home, not being carted to different doctors to sit in waiting rooms. I cannot believe the inaccurate information that is out there about hospice. I have no suggestions for people who are being fed inaccurate information, but I just feel really bad for all of you that you can't take advantage of a wonderful service.

By lurkingforacure On 2011.10.09 16:04

I would contact several hospice agencies directly and let them come evaluate your loved one. My mom was in a SNF and they were getting ready to put her on hospice, which would have come to her in the SNF if she stayed there (we couldn't afford that) or to her home when I took her home. Same service, same number of days, etc., only difference was where my mom was physically going to be located.

As it turned out, my mom was rushed to the ER and passed away in less than three days...but right away hospice came to the hospital and helped with her comfort care while in the hospital. They can go anywhere the patient is, and my mom was NOT bed bound, at least not until she went into the hospital. Call around to different hospice places, there are usually more than one. I'm so sorry you are having such a hard time and hope you can get some relief soon.

By monopoly17 On 2011.10.10 21:07
Thank you for your response...I will call around and see what I can do. I'm just so so tired.

By LOHENGR1N On 2011.10.10 23:41
monopoly, if you go to the top of the page and click on commentary, then on top on that page click on resources, scroll down about two thirds of the page to senior information and click on this site works for every state and will after answering a few questions (if you don't know guesstimate answers it is anonymous) it can give what might be available for help along with the phone number and address closest to your/their home address. I hope this helps some if even just giving more options to check out for help.

By monopoly17 On 2011.10.29 18:04
Thank you all for your help....I contacted a different Hospice and they said he is more then ready for their help.We just signed up this past fri. I'm trying to get the 5 days respite but so far no beds available for a 3 star place or about. I will not let him go to anything but 3 stars or about. That is a rating on nursing homes. I know it's just for 5 days but I want it to be a good experience for him.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you