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By hapidawg On 2009.11.09 20:50
I watch my husband disappear daily. Our lives together, as it once was, is quite gone. He has lost 30 pounds. I am tied to the house. As far as care, there isn't too much to do yet except meals AND being there. He sits in front of the T.V. all day long . . . 'til time for bed. Sometimes the sound of the T.V. is more than I can bear. This man was quite good at golf and tennis. We hiked, built, fished, traveled, worked on our home. Now, nothing. The responsibility is totally mine. I know I am depressed. Daily I try to "snap out of it" only to say at the end of the day, "maybe tomorrow." He didn't respond to any of the Parkinson's drugs. While taking one of them he was diagnosed with Alzheimer's. We changed to another drug - Amantadine - and he is not nearly so confused. He appreciates my efforts and tells me so. He can hardly get in and out of bed by himself. Dressing is very difficult and he often needs help. His walking deteriorates daily and I notice him using his walker more and more instead of his cane. Thankfully he has a pleasant demeaner. He's just not very "there." I am bogged down with thoughts of how long will he have to suffer. Parkinson's is a hateful disease. We do have available some home-health care - I just haven't availed myself of it yet. It's as if I do it's admitting that he has a very serious illness and I can't stand for him to "realize" there's NO HOPE. I read about the "hope" thing but . . . come on - Parksinson's marches on and it's not pretty. I don't think he realizes how ugly it is. He, somehow, holds on to hope that he'll feel better . . . tomorrow. It's not happening. It's like living alone but not being able to live a life. I don't feel I can go out and have fun while he feels so rotten. My depression knows no end. He was diagnosed five years ago. Oh yes. Guilt. Another lovely companion for the caregiver. Sometimes I sound impatient with him - and I am - then I get to beat myself up for feeling impatient and sounding impatient. He's often in a doorway or hallway when I am coming or going (which is constant). He doesn't realize he is in my path (not fully aware of his surroundings) and when he does, it takes some time for him to move. I am deep in despair. Sometimes I don't know how I'll bear it. Yes, it would seem . . . it's all about me. Guilt, guilt, guilt. I am interested in nothing. Not music, not painting (watercolor), not quilting, not gardening, not cooking. . . NOTHING. Most often all I want to do is lay down. I'm sorry, I just not as stoic as he deserves. The thing is . . . in no way would I desert him in this time of need. Just venting. Being the real me 'cause nobody here knows me and I can be real. Good, bad or ugly. Me.

By lbellomy On 2009.11.09 21:10
I feel a great deal of empathy for you. A while back I also thought that I did not have the initiative to do 'things'. Right now I have a husband who is very clingy so I do not get some things done like mowing, painting walls- and realize that I was doing some things.
Lorraine

By annwood On 2009.11.09 21:31
Yes, I understand what you are going through and it is terrible. I am sorry that you are going through all of this and I am very concerned about your depression. I think that you should see your physician and see if an anti depressant is in order for you. I had to go on Lexapro when things got this way with my husband and it certainly helped me. Not to say that life will be great but it helps. I would also encourage you to avail yourself of that home health care - it will give you some time away from the situation and you will be a better caregiver for it. It sounds as if your husband is very appreciative of your care and devoution so he will understand that you need some time for yourself.

I do think that when PD pts get this way they are often oblivious to the extent of the disease and this can be a blessing for them. It is so very hard to watch the steady decline of someone you love and to know that there is absolutely nothing you can do about it. I have said before that when the end comes you are prepared because you have been mourning for a long time as you watch them leave you a little bit more everyday. I too have trouble with the hope thing because I lost that battle two years ago. It seemed that everyday brought another loss and I always knew that in the end this disease would win. I can offer you hope for yourself. This will end and you will go on with your life. You will be different and your priorities will have changed. It will take time but you will make it.

We all get impatient - you are exhausted and you are doing everything yourself. It just happens. The guilt goes along with the territory - we all feel it. To this day I sometimes ask myself if I could have done more or said something better. We all do the best that we can - this is an impossible situation and you are doing the best you can. Give yourself a big pat on the back.

Stay with us, vent as much as you like, and call your physician! Hugs

By hapidawg On 2009.11.09 22:44
The best thing I get from your caring replies is that I am not judged - only supported. Thank you for that.

By hapidawg On 2009.11.09 22:45
I did get a prescription for an anti-depressant. Haven't picked it up yet. Will do.

By annwood On 2009.11.09 22:59
You are wrong - I judged you to be a caring, devouted, compassionate person who is in a lot of pain. Get those meds tomorrow!!! It takes about 2 weeks for you to get a theraputic dose going so don't be discouraged. Stay with us and let us know how you are doing.

By dkleinert On 2009.11.10 00:37
hapidawg: I so understand and wish I could hug you right now. I feel the same things and am going thru the same things. My husband was diagnosed 6 years ago next month. I so relate to the "being in the way" thing. My husband so many times is standing in front of something or in a doorway and just stares at me as I am walking toward him with both hands full, arms full of laundry, bags in my hands, on and on.......I, too, become irritated at all of it sometimes.

One thing that has helped me some is having the Occupational and Physical Therapists come to the house each week, and soon a Home Health Aide will begin coming to the house. From this wonderful forum I learned that this help was available, and the wonderful people here helped me thru the maize of what to do and how to acquire the help. Just having these competent, loving, caring professionals coming in and out during the week has been a god-send to me. You mentioned you had not invited them to come to help you yet - you might reconsider. It is a comfort and relief to know you have people to ask their opinion about things, ask for advice, help, etc. I find I really look forward to their appts each week. So for now, if your job is to be there for your dear husband, then so be it. Accepting help from the agencies is a very positive step, and yes, you are correct, it means accepting that your husband is ill with a dreadful, progressive disease, and it will be hard for him at first too, but after awhile, he will accept it, and maybe welcome their visits.

One of the wonderful things that the Occupational Therapist has taught my husband to do that is such a comfort to me, is that while I am at work, he takes pictures with his phone of things he is doing and sends them to me so I know he just ate, took his medication, fed the dog, brought in the mail, etc. Those photos mean the world to me, and he has enjoyed doing it. He has actually gotten quite creative with the pictures. An empty, open mailbox, a plate that has obviously had food on it that is now eaten, the open compartment of his pill box.....on and on. Anyway - I would never have thought of that - instead I would call and he would not answer the phone and I would worry or come home and find he had not eaten or taken medications all day while I was gone. So when I talked the OT about it, she came up with this great plan and it is great. Now I will tell you that when he forgets to send the pictures, now I worry, but he remembers more than he forgets because he likes doing it and it is something new for him.

So, maybe talk to Home Health and the Council on Aging and see what help they can offer. You might find it breaks the cycle you might be in and helps both of you.

I can tell you are a compasionate, loving, caring person - so don't be hard on yourself. You are going thru a grieving process too - grieving what won't be that you thought you would have.......don't be hard on yourself. For sure you are welcome to say anything here, ask any question, vent when you need to. We all care and are there for you!

By karolinakitty On 2009.11.10 07:25
So sorry you are going through this rough time. I agree with annwood about getting those meds. Sometimes you get to a point where you feel like you are living in a box. Although my man has been only diagnosed less than a year, it has been a full year of progression. He can still dress himself and get around our property fairly well. I am the one who does everything. I am the landscaper, maid, chef, contractor, plumber, electrician etc. We have no money to get things done by others and thank the Lord i grew up in a house where i was taught "how to" everyday repairs. So having no money i can't even get out to do anything if i wanted. We live almost 20 miles from the nearest town and that's where i do my shopping. It's my little time alone..... Isn't funny how that TV can sometimes just drive you crazy. If i may suggest what i do.... We do have satellite TV. only because if we didn't we wouldn't have any. It has XM radio, i switch over to music for awhile...calms the soul...we both love it and it braks that up a little.
Now about hope...... there is hope right here, right where you are ...venting, giving us who you are and how you really feel. We all are here for you...won't judge you...won't get in your way... won't let you feel ALONE....we may not be here exactly at that time when you are at the break point but within a few minutes or hours you will have a response. There is hope in the fact that there are folks like us who have some answers for you to questions you may not know.... Is there hope that my man will be cured, honestly i don't think so, but i still can hope for it..I'm not living in a cloud....It's an ugly disease, but there is a life there too. No matter what, they are our loved ones and always will be. I'll go to the saying."Laughter is the best medicine" ..it's hard to smile when you can't, literally can't. the grumpy or bored look of PDrs gives way to people "thinking" they are. This weekend while at the flea market many regulars asked my man why he was so "grumpy" ... he said "Well, remember when mom told you your face will stick like that if you keep it up?" "It finally happened" ... Hope is keeping a little humor in a world that is humorless. It's not a funny disease and I know for me sometimes i scream out to God how unfair this is to us. We've only been together 5 years and haven't done our living yet as a couple. We haven't seen all we wanted to see as a couple. Four years into a relationship and you get hit on the head with a disease that you know will overtake your life. I refuse to let it get me down.
I may have to do everything and the fun of my week is being able to go to town and pick up groceries, fill the van with gas and hit the garbage dump (My man thinks i have a boyfriend there since i like to go there so much) AGAIN, it may seem like i make light of things....for me.... it gets me through,
Please continue to take a break and let us know how things are going.We are here for you and will do our best to help with just about anything. None of us are doctors or psychologists but, we are here ....

By Emma On 2009.11.10 08:33
I too understand what you are going through and it is more than rough. This disease is hard on everyone, patient, and caregiver. Outsiders only see the impact on the patient and don't have a clue what the caregiver is struggling with. That's why this forum is so great, we do understand and we feel your pain. Like you, I have a hard time with the concept of hope. I used to hope for a cure in time for my husband, that's gone. I used to hope that he would be one of the lucky ones whose symptoms leveled out and never got really bad. That's gone too. Now I hope that he won't have a bowel accident today, that he won't fall and break a bone, that he will get relief from his constant pain, I hope that nothing happens to me and he's left with no one to care for him.

Just as his Parkinson's seems to change from day to day, my ability to cope with it changes. Sometimes I'm overwhelmed by even the little things (because there are a hundred of them a day) and other times I manage to be downright cheerful, almost. There are no easy answers but you have our compassion and support.

Please know that we are here for you.

By netgypsy On 2009.11.10 09:16
First of all you vent, then you get to the doctor and get the meds for yourself - not ease the pain but so you can get in gear and get him the help he needs. There is NO excuse for him to be this bad after only 5 years. There are LOTS of drugs and treatments that work really well. WE are dealing with 10 years after diagnosis and are getting pretty much back to normal. Each problem is treated individually. One at a time but sinemet is the ONLY drug that really helps a LOT. There are some side effects but they can be dealt with one at a time also.

Michael J. Fox is golfing and playing tennis at leat weekly after 17 years with PD.

If your husband is sleepy look into provigil. If he's having lot of crashes (off time) look into reducing protein and fat during the day and increasing it at night. If he's losing too much weight add a very high calorie drink at bed time. We use 3 tablespoons plain regular yogurt and three tablespoons of one of the good oils plus a bit of water. If he's "not all there" look into one of the dimentia drugs - there is a patch that is supposed to be very good.

There is an ASK THE DOCTOR section at the University of Florida Parkinson website. Go over there and ask questions.

If your husband had had it for 25 years I could perhaps understand your dispair but only FIVE. NO - this is NOT typical and you CAN do something about it. Look into dbs. It's a miracle worker if he is a good candidate.

So hang in there and don't give up. There are tons of things that can be done to improve his condition.

So second of all get him to a major movement disorder center like the University of Florida in Gainesville or Johns Hopkins or Mayo (they don't take medicare so be careful with them) or Cleveland Clinic or wherever you are there are such clinics all over the world. A relative who was hallucinating and shaking and losing huge amounts of weight recently had deep brain stimulation and is now NORMAL! NORMAL - as is her uncle who also had it recently. As is a form colleague who was pretty much immobile. He's normal now after deep brain stimulation was implanted. But sinemet also does a really great job. It just takes tweaking.

So get your depression fixed, get angry and get moving. And if he needs swift kick in the rear, do it. Don't you think he sees how you look at him? He's not dead. This is NOT a death sentence. There are tons of PD patients running marathons, doing sports, working out and living their lives, and having a depressed spouse who thinks they are hopeless is not helpful.

Good luck. There are LOT of much worse problems than Parkinson's.

By Newcaregiver On 2009.11.10 09:53
Hapidwag: I understand just how you feel! My parkie's symptoms aren't as bad as yours, but I have some of the same issues. It is if my world has shrunk. I go to work and come home. the TV is always on or he is doing puzzles or computer games. Rarely is there interaction. He just seems too drained and unable to respond. It is like he isn't in there anymore! When he is around people he seems to light up and rise to the occasion and that is wonderful. I am glad he does, but that also means that those around us don't have an inkling of what it is like at home. What he is really going through and, in turn, what I am going through. We are thinking of moving closer to family since we are in a city without family. I am hoping this helps long term.

I hadn't really thought about anti-depressants. that might be a really good idea.

I am thinking about you! We all know how you feel!

By lurkingforacure On 2009.11.10 10:08
Oh my, how normal you are in this PD caregiver world. We all have felt that way, every day. PD is like a relentless rollercoaster, isn't it? We look frantically for an exit to jump off the damn thing, and it always seems like there might be one coming ahead, ...but as we get closer, no. Another hope dashed. And in between are all the terrifying drops and swirls and loops.

I know there are things worse than PD. But man, is is hard to watch your loved one feel so bad. The other night my husband told me "you have no idea how hard it is for me for fake it" and I just burst into tears. I couldn't even come up with a response, nothing at all.

I have never wished ill on anyone, but lately have been feeling so frustrated over the lack of a cure or even better treatment for PD (so much research, and nothing yet, ugh) that I wondered how fast we would see a cure if the CEO for Pfizer, Merck, Novaris, fill-in-the-blank big pharma name got PD? I wonder.

By WitsEnd On 2009.11.10 11:11
Yeah, did everybody see the announcement where one of the major drug companies was shutting down a large number of its 6 labs?

Me, I've always been a "doer"--a "fixer". Having to sit by and watch someone else suffer and not being able to "fix it" was really hard.

By Emma On 2009.11.10 11:33
netgypsy - I'm glad to hear that your husband is doing so well after 10 years. However, with all due respect, I do not think that you can say that someone elses situation is not "typical". There is no typical with Parkinson's. Every person has a different set of symptoms, a different response to medications and a different rate of progression. We have done most if not all of the things you recommended and more. We have seen a very highly regarded movement disorder specialist. We have been to a reknowned clinic. The disease continues to progress in spite of medication tweeking, diet tweeking and everything else. As for dementia, my husband tried the Exelon Patch. It did nothing except cause serious gastrointestinal problems. He has been taking Aricept for six years. At best it may have slowed the progression somewhat, but progress it does. DBS is not a miracle for everyone. It can, in fact, have devastating outcomes for some people. Read some of the prior posts on this board for some not so positive outcomes.

Some people with Parkinson's may live for many many years with very mild symptoms, others will progress quickly in spite of interventions. The people who are posting on this board are not sitting on their hands doing nothing. We are all constantly, and sometimes desperately, searching for something that will help. We post on this board to vent, to relieve the stress, and yes, sometimes to feel sorry for ourselves. We do this in part so that we don't have to show that fear, anger, despair to our loved one. We are not perfect but I doubt that anyone on this board is spending their days crying and yelling and voicing hopelessness to their parkie. We try to keep up a strong presence, we do the best we can. At the same time, just as we take on the job of caregiver and sympathize with what our loved one is going through, this is something we are all in together and the person with Parkinson's needs to be aware that there is stress for the caregiver and they need to be willing to help with that (by not making us feel guilty for taking time for ourselves for example) just as we help them.

Caregiver stress, not just for Parkinson's caregivers, but any caregiver of a chronically ill person, is very well documented and just as real as Parkinson's itself. Some people will cope better than others, just as some people with Parkinson's will fare better and live longer than others.

Perhaps I read something into your post that wasn't there, if so I apologize but I couldn't help but feel that you were chastising the original poster. Your experience is not everyones experience and never will be because this disease is so individual. We are all doing the best we can.

By annwood On 2009.11.10 12:26
Thank you, Emma. I believe you said everything that needed to be said. PD is different for everyone and most of us are trying everything mentioned, including DBS. Sometimes it works, sometimes it doesn't.

By caregivermary On 2009.11.10 13:02
thank you Emma. I was about to yell for annwood on this one.

to the original poster: I do feel for you and understand what you are going through. This is a very difficult journey we are all on. Stay with us and we will help you as much as we can.

By hapidawg On 2009.11.10 13:43
Thank God for mornings. Nothing is quite as desperate in the morning ... though I know that by evening I will most likely be "there" again . . . hopeless and despondent. I want to thank everyone. Your comments made my heart feel a little lighter. We have tried everything I know to try. I have taken info to our neurologist. Reams of paper of internet research have been printed out. Recently, I threw it all out as most of it is indelibly etched on my brain. I still research but until I see something new, I don't bother with printing. We have tried many PD drugs. None have worked and many have created horrible new symptoms. My husband has been diagnosed with Parkinson's Plus which has a sub-category of at least five, worse than "plain" Parkinson's outcome. Sinemet and like drugs made the disease much worse. DBS is not an option for my husband. Diet seemed to help the most. A purely vegetarian/no refined sugar/no gluten diet helped - absolutely. How hard is that when sometiimes it's all you can do to survive the day? Sometimes I do well for weeks but then other times, I can't seem to get it all together. And then you have to think about getting enough calories and the "right kind" of fats, plenty of fiber. He cannot afford to lose any more weight. The balance is impossible -- for me. He doesn't eat as much as he used to - no matter what I prepare. With all this we have to balance meds for constipation and urinary incontinence. We move from drug to drug, herbal (with doc's knowledge and approva) and otherwise. On a good note, today our lift-chair recliner was delivered. Bought it at a neighborhood thrift store. Works great. The VA put a stair chair on our stairs so he can get to our bedroom. We will have to move though to a house that will accommodate a wheelchair as that is not far off AND a walk in shower, etc.

My anti-depressant prescription is in hand. I'm very anti drugs for me as I have had many adverse reactions over the years. However, desperate times require desperate measures and these are definitely desperate times.

I THANK YOU ALL FOR YOUR CARE AND CONCERN.

By hapidawg On 2009.11.10 14:11
Forgot to mention. We see a local neurologist, but once a year we go to Denver to the University of Colorado Hospital where they have a Parkinson's Research facility. This is where the PD Plus was diagnosed.

By WitsEnd On 2009.11.10 15:56
There's a fine line between hope and despair. The PD roller coaster rides goes on both sides. PD is a terminal disease--but then so is life. Everyone dies--some just do it faster than others. I had a good friend who died of leukemia when we were in our 20's. When she was going through her suffering her motto was the song "One Day at a Time". When I get in the depths of despair I always think about her and I remember the words to that song. It's really more of a prayer...

I'm only human, I'm just a woman.
Help me believe in what I could be
And all that I am.
Show me the stairway, I have to climb.
Lord for my sake, teach me to take
One day at a time.


Chorus:
One day at a time sweet Jesus
That's all I'm asking from you.
Just give me the strength
To do everyday what I have to do.
Yesterday's gone sweet Jesus
And tomorrow may never be mine.
Lord help me today, show me the way
One day at a time.

When things get too much to handle, focus on today. Forget about yesterday. Don't think about tomorrow.

Hang in there and God Bless everyone.

By karolinakitty On 2009.11.10 19:32
When in one of my down times as i saw my man slipping away, i wrote this poem and i hope you think me not proud but i wanted to share it. I've faced the truth but still have days as we all.

As for "not typical" . After all the research i've done, phonecalls, reaching out in this last year...there is no typical and we are all proof of that....

A soft spoken voice, a gentle hello
I don’t understand the path we’re on
Does anyone notice the voice is un-heard?
Does anyone notice the joy is but gone?

There he sits..head down…he nodded off
Nobody cares or are they afraid of him?
It’s not contagious, it just slows him down
It’s not frustrating, ya just need more patience

“How ya doin?” the quote of a lifetime
Roared out of the giant and made ya smile
The gentle giant, who cared for man
My gentle giant, who cares for this man?

There are friends and there are acquaintances
Friends had contacted, acquaintances not
So sad to see a great man there
So sad to be a great man there

Out on the water, a fisherman’s dream
Casting and reeling, a pleasure for sure
A rod goes down, he musters up
A rod comes up, another lost fish

He goes through his day, as best as he can
The pain is unreal, but he shuffles on
Life is too short to stop doing now

Life is too short..........


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