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Topic Introduction of myself - Son and the only caregiver to my Dad with PD Go to previous topic Go to next topic Go to higher level

By HKMP5N On 2013.06.09 12:47
Greetings all:

Found this forum through searches, hope I am in the right place. I am the only caretaker for my Dad. My Dad, 71 years old, was diagnosed with PD nearly 4 years ago. He was started on sinemet and eventually ropinirole was added as well.

The first couple of years the tremors were really well managed. Over time the sinemet dosages have increased as well as ropinirole increases. Now, the meds seem to have less and less effect.

Over the past 8 weeks or so I have noticed him having fatigue of what I would consider an extreme nature (he also has emphysema). I took him for his Coumadin test last week, I always drop him off directly at the doors to minimize his walking, etc. Upon getting him back home he nearly collapsed in his recliner, kept using the word "exhausted", and believe me he looked it. Is this normal in later stages of PD?

Also, I pay close attention to his walking. He pretty much has stopped "stepping" and now just by and large shuffles his feet. Does this have meaning?

I thank all of you in advance.

Edit: Adding more stuff here.

I am 42 years old. I don't show this to my Dad but sometimes I find myself really angry with all of this. My Dad is not remarried, I am an only child, and due to my Dad's behaviors over the years he only has a couple friends that chose to remain a part of his life. He has one brother, but they no longer talk as well.

I feel on complete life lockdown. I have not taken a vacation of meaning in over 2 years and fear if I do that will be when something requires a hospital visit/stay and I am the only one who can make decisions for him in that regard. I don't want to be angry but I just never saw me at this stage in my life having such an overwhelming responsibility.

By jcoff012 On 2013.06.09 17:06
First, HK, welcome to the forum. Others will be along, soon.

We all understand your anger, loneliness, and fear. My husband was dx four years ago, but had tremors before dx, as many do. We have had a great many health issues in the last five years, and since I retired early 13 years ago, the extended family expects me to be each person's caregiver. Right now, we watch our almost four year old grandson during the week, and I have done so since he was three months old. Add to that advancing PD...

We are taking our first real vacation in over four years in October, so, yes, I understand the need for alone-time, I really do. Fingers crossed we will be able to go.

One thing to remember, your Dad, and all PWP here, I'd not ask for this. No one wants to have his/her life change so drastically...and they certainly do not want to be "taken care of" with little or no good outcome in the future. As hard as this is on us as caregivers, imagine their anguish.

We all understand...we really do. We are all at different stages of PD. we all want you to find a shoulder to cry on, an ear to hear you speak...again, welcome..I wish we had met for a better reason, but know that you can say anything, ask for clarification, or just come on to vent or say, as you did...why?

One other thing, since you really have a limited support system, *I* am proud of you. proud you are so kind and loving to your Dad. Next Sunday is Father's Day..and I am glad you honor yours by being there and by accepting your life's new challenge. You are a very special kind of person...take care of yourself...for yourself. Hugs and love, Jane

By LOHENGR1N On 2013.06.09 23:49
Hi HKMPSN and welcome to the forum, You've found a great place full of caring people who will help any way they can. I'd suggest contacting any of the Parkinson's disease associations or organizations and getting what free booklets they have to read up on this disease and symptoms. The foot shuffling is a common symptom and may or may not be corrected by adjusting His medication. Fatigue is also a common symptom. So the more you learn the less you will be likely to be panicked or over worry when a symptom shows itself. But keep asking and We'll help to let you know what is probably going on.

I'm sure your Father never intended to have you shoulder this much responsibility and care of Him either and We're all on lock down with this disease. Getting angry at this disease and the situations We find ourselves is normal. Just as long as we don't lose sight of where our anger is directed and that is at the disease and not the person. You seem to recognize that and that is good and healthy also. You sound like You are doing a good job and reaching out to places like this forum re-enforce your attitude and commitment to try and do the best you can. So again welcome keep posting and voicing your concerns there is a vast wealth of knowledge here to draw upon People who have been there done that or are there doing that and those that will be there doing that. All different phases of Parkinson's disease and are happy to take a minute and help. Take care, best of luck and hang in there

Doc Holliday: What did you ever want?
Wyatt Earp: Just to live a normal life.
Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By Pearly4 On 2013.06.10 06:56
Greetings HKMPSN! I am a former caregiver to my mother who died several years ago. Each Parkinson's sufferer and each caregiver are unique but I believe caring for a parent with any chronic disease is very, very different than caring for a domestic partner and you are to be congratulated in your dedication and caring efforts.

Regardless of your father's lack of friends or other family members you are, after all, still his son and as such he sees you as someone who doesn't really have the right to speak for him, to him "in that manner" or tell him what to do, right?! And sometimes, that's just what you have to do with each Parkinson's patient.

You've done a great job on your own, but now its time for help and I would suggest contacting your local Area Council on Aging who can provide support in many areas of care, a church if you attend, speaking with the medical community (his doctors?) or find a local support group if possible, for assistance. Is there a local senior day care center he can attend for part of the day? And yes, you may have to insist he attend for your own health and safety - again a difficult situation.

Don't give up, I found the forum a great source of support and ideas!

By lilflower On 2013.06.10 08:23
Greetings, you've come to the right place. Everyone here understands your frustrations. PD affects not just the PWP but everyone in their life, especially the caregiver. I have found added strength and encouragement from the folks here and I hope you do to as well. Welcome.

By Imtired2 On 2013.06.10 12:39
Hi HKMPSN,
I am caring for my brother, who is only 65 years old, and has cancer also. I know how overwhelming it is to be a caregiver. I find myself getting angry too; I also feel like my brother takes advantage of me because his movements are not consistent. Sometimes he can get out of his chair or bed, and walk normally, and other times he hollars for my help because he can bearly move. Every day is different. Every morning is different. Every night is different. I just have to remember, that it's not up to him.

As JCOFF012 said, "No one wants to have his/her life change so drastically...and they certainly do not want to be "taken care of" with little or no good outcome in the future. As hard as this is on us as caregivers, imagine their anguish." Jane, your advice really hit home with me. It puts everything into perspective now. I can shift my anger away from my brother and be a better caregiver now.

Dolly

By parkinit On 2013.06.11 22:15
HK -

Welcome. If you read the past posts, you'll understand that we have all "vented" and shared our own personal anguishes with others who are going through the same thing. That is the beauty of this site, HK. Don't worry about expressing your true feelings. We are not here to judge, we are here to share the burden with one another and perhaps grow a bit along the way as caregivers and as people. I know I've received a wealth of wonderful advice and thought-provoking comments here.

Again, here, you can feel safe in knowing we are in the same boat and we understand. You are young, but many of us here feel that we are still young (in our 50s), so you are not alone. Sometimes I feel that I am chained to my home due to caregiving as I can't leave without a relief person or go outside without a monitor in tow.

Then a comment is made similar to our sweet Jane here, who is so supportive and so positive. We need her here so much for that very reason. She sets us back on our tracks and encourages us to be better people. Many burdened caregivers here do the same.

We are here to encourage one another. We are here to encourage you, HK. Welcome to the family.

By susger8 On 2013.06.12 07:18
Hello, HK! I took care of my father for about 7 years -- he passed away last year. Taking care of a parent is different from taking care of a spouse -- in some ways easier, in some ways harder. But never a piece of cake, for sure.

Are you still working? It was not an option for me to stop working to care for my dad, since I am the main wage-earner in our family and my husband does not get any benefits. I had full-time live-in health aides for my dad. Expensive, but very fortunately he had enough savings to pay for it. We were able to keep him in his home until the very end.

If your dad has any money at all, please consider hiring some assistance so that you can have some kind of a life. If he has no money, is he on Medicaid? It used to be that Medicaid would only pay if a person was on a nursing home, but that has changed.

Do you have a social worker? Your town or county should have an Office on Aging (or similar), who should provide a free social worker who can help you figure out what services your dad is eligible for. There are a lot of options out there, but very hard to find without the assistance of a social worker.

Sue

By jcoff012 On 2013.06.12 19:23
Well, Park, YOU made ME cry...thank you for your lovely comments...We are all only able to live life as we were taught or as we have experienced. For our family, we had fifteen years with no major health problems, then hit a wall...too many to discuss and rather hard to believe...

But, no one promised anyone a life without problems...it's HOW we choose to face them that matters. We choose acceptance of the facts as we are able to understand them, and to fight with our heads held high until we can no longer fight, then to accept that no one WANTS this sadness or hurt...and get on with it!

I will always love my PWP, my dear husband, but I know the disease will, and is, rob him of his kindness, strong body, and on and on...doesn't mean I don't want to smack him sometimes, or hate his annoying slurping of his oatmeal, or his petulance over trivial things he INSISTS he did/said...I just know that I will miss him when he is gone, miss his spirit and strength, but am GRATEFUL for all of these years we HAD it all...

You say you are glad I am here...I thank you for that...But, I wish for everyone here a life free of Parkinson's and will support anyone who can find the REASON and a cure so that a once vital person no longer has to endure this PD.
Hugs and love, Jane


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