Accepting the Inevitable

As mentioned in previous posts my dad has Parkinson's Disease (PD). He was given this tentative diagnosis in 2006. After a battery of tests he was given a definitive diagnosis of PD last year. He was sick and in the hospital about 6 months ago for an unrelated ailment. While in the hospital he fell and hit his head and ended up with a hematoma on his head. From that day forward his health has declined dramatically. :frown:

Right before I left for Tijuana in April, I was talking to my dad and I noticed he was drooling as he was reading the paper. I was so shocked I couldn't be grossed out. I just grabbed a paper towel and wiped him up. It was at that moment that I had the very selfish thought that, "OMG, this is what the rest of my life is going to be." Drooling is one of those unpleasant symptoms no one tells you about. You have to research to find that out. Another symptom of PD is losing the ability to swallow and talk. His voice often fades to a whisper which we can barely hear by 6 PM. My father, the family orator, with the splendid resonant bass that used to sing solos in the church choir and spirituals or Billy Preston tunes at home when the mood struck him. Now I can barely hear him when he asks me to pass the salt across the table.

His movements are slow to say the least; but I think the worst part is that his mind is still as sharp as it was 10-15 years ago. It's just that his body is falling down around him.

I know Parkinson's Disease is a degenerative disease and he gets weaker seemingly by the week; but for some reason I thought he and we would be spared certain indignities. He hasn't been able to drive since February because of the neuropathy in his feet and the uncontrollable but intermittent tremors. This was and is a very hard thing for him to deal with. He just turned 80 last week and he has probably been driving about 65+ years if you count the tractors on the farm where he was reared in New Jersey.

Mom and I try to let him do as much as he can so as not to emasculate him. Unfortunately last week our neighbor across the street saw him taking out the trash and ran over to help him; because she said he looked pathetic, like he was going to fall. He always looks like that now! His once straight and proud 6'2" frame seems to be permanently hunched over now. Mom and I have kind of gotten used to it. If she thinks he looks frail taking out the trash with his cane in one hand and that giant wheeled can in the other she should see him trying to sit down or stand up. His muscles are atrophying and he hates to do his exercises.

Two good things came out of our neighbor embarassing him by taking the trash can out of his hand. Turns out our neighbor who truly is a sweetheart is a hospice volunteer. 1) She put us in touch with a nurse at Altus which is a hospice service. I always thought hospice was a place people went to die, and that scared the fire out of me. The way the nurse explained it to me, hospice is like the cavalry, they come in to help save the family/caregivers. My mom was supposed to be there when this nurse explained all about hospice but she conveniently forgot. I think she is having a more difficult time than I am accepting the changes and decline in her husband. For a fiercely independent woman she depends on dad a lot.
2) The nurse who came to tell me about hospice owns a local retail store and she needs part-time help. I went for an interview on Friday and I start Monday (today!). It's a small store and they sell scrubs to nurses and other medical professional as well as shoes, watches and stethoscopes. I will only be working two days a week and alternate Saturdays, it doesn't pay much. However, I think it's important that I have a life outside of being a caregiver. I think that when the time comes it will help me to have a life outside of nursemaid.

And for added fun mom's primary care physician diagnosed her as being in the early stages of dementia last fall. I try not to get angry when she accuses me of stealing her jewelry or a favorite sweater or blouse. Usually it's at the dry cleaners or she has just misplaced it.


Why did I call this blog accepting the inevitable? Because I know that one day my father is going to die; and as a daddy's girl that terrifies me. I just can't imagine my life without him in it. :frown:

I know there are many others here who are caregivers to spouses, parents, and other loved ones. How do you handle it? How did you learn to accept the inevitable, yet still live in the moment?

Comments

Preface: I was about to start typing a blog about my own fathers illness when I stopped to read your own..


I dare say I don't 'handle' it at all. I take the, 'Dad is going to be okay' approach until I'm forced to face the reality I know that looms.... possibly in the near future.

Reading the description of your 'fallen' dad absolutely made me tear. In many ways we are in the same shoes NJ. The best advice I can give you is as follows:

1. Your dad, no matter what his physical frailties may be, is still that strong man. I know you know this but sometimes we need that reminder. The disease is a mask.. the person we know and love is in there.. and to keep us sane, we must always remember that.

2. Don't live every moment like it's the last. Live your life the way you would normally with a few exceptions... make time.... for him, for you, for the rest of family.

3. If you need to have a break down, have one. Don't try to appear tough. We all have to let it out.

and

4. The only way to accept the inevitable is look the devil/the disease in the eyes and then 'move on'. The disease doesn't have to be everything. It will rear it's ugly face... but it makes the good moments even sweeter.

I'm here 100% for you NJ.
Anything, Anytime...
 
NJ...I don't know what to tell you sweety. I've been with my grandmother as her full time caregiver for the last 5 years or so, and over the last 6 months to a year, she has gone down so much. She also has parkinsons. It is so hard watching someone you love so much, and have always seen as the strong one, go down like they do. It hurts my heart so much some times.

I love my Grandmother so much, but some times, I just need to be away from her. I need time to myself, where I don't have to worry about her. I know I sound like a horrible person saying this, but I don't think anyone really realizes how much being a caregiver takes out of you. Here lately, I have been very curt with my Grandmother. I just don't seem to have the patience with her that I once did. I realize that it is me that is the problem. She is just doing as she has always done for the past 90 years.

Friday, I ended up having to take her to the ER due to her having sharp stabbing pains in her stomach, and vomitting. She's still in the hospital, and I pray that she will be back home with me tomorrow. I have enjoyed having the house to myself for a change, but at the same time, I long for her to be back home with me. I love her so much, but it just takes so much out of me sometimes.

This trip to the hospital with her has not been as hard on me as it was last summer when she was in there for 10 or more days. Last summer, I just knew that that was the end of her, and I cried myself to sleep just about every night thru that whole ordeal. I have since learned that she really is misreable with life right now. When its truely her time to go, I've got to tell her to go on.

I feel so selfish though. We kind of have a trade off going. I live in her house expense free, and she pays my monthly bills (credit cards and phone bill), in exchange for me being there for her. My biggest fear is when she is gone...what will I do? I don't own anything. I don't have a job, and I don't really have a very good plan as to what I am going to do when she dies. It scares me so much sometimes, and often I cling to my Grandmother for selfish reasons. I sometimes wonder if she is just staying alive to take care of me, and I often feel like a heel and a mootcher. I know I am not but it still remains with me.

So...lol... I don't really think I've said anything terribably helpful here, NJ, but I do understand what you are going thru. It hurts so badly sometimes, but sometimes the only thing you can do is pray, and know that God has a big plans for us all, know that everything that has happened, and will happen, is all because of him, and that we are here to serve him.

Stay strong friend. Keep up your faith, and know that there is a meaning and a purpose for everything that is going on in your life right now. I'll be sure to keep you and your parents in my prayers.

If you ever need a shoulder to cry on or anything like that I'm here for you.

Josh
 
I didn't mean to steal your thunder Notthe7. Please share with us about your dad.

I don't know about you and Unabear09 but I'm an only child so I feel honor/duty bound to be here and help. If not me who? Culturally speaking, the tradition is that black people do not put loved ones in nursing homes. I hate to say it but I almost hope he passes before it gets to that point. It would kill me and him to have him in a nursing home. I just know it.

Unabear09, I totally get the guilt at enjoying the empty house, yet missing them at the same time. I spent a week with my college roommate in North Georgia and I was afraid to go for fear of what might happen when I was gone. Mom can't lift him when he falls like I can.

That shuffling gait thing PD people do is hard too. Dad has fallen at least 4 times since Christmas. Once just last week, he was doing his evening check of all the doors and windows to make sure they were locked and next thing we knew, 'boom' he was on the ground. When I asked him if he was hurt, he said, "just my pride."


:eek:fftopic:
For those of you who are considering children or have just one child right now. Please have 2 or 3 so that when your time comes they can share the responsibility for your care. And if necessary fight over which is the best nursing home to put you in.
:tongue:
 
You didn't steal my thunder in the least NJ.
It was comforting to read your story rather than write my own.
I'm glad you're brave enough to share it with us.
I know I appreciate it whole heartedly.
I just wrote that so you would know I'm feeling pretty bummed right now too.
 
As for losing one's dad, I know that is hard. I dont know if it is easier to watch him slowly deteriorate or to have it happen suddenly. I too was a daddy's girl and my father died of lung cancer soon to be 15 years ago. I grieved while he was dying took him to his treatments and was there with him the night before he slipped away only going home to change to get that fateful call. My brother said that I sounded like one of those grieving women in the middle east keening for 20 minutes. I dont remember any of it. I still miss him terribly but believe it or not I am still moving.
Since then I have cared for my aunt who died 4 years ago after years of congestive heart failure, diabetes and vascular dementia. Now I am caring for my mother who this past week had a mini stroke and lost the hearing in one ear suddenly.
I do understand your fear. I have understood it all along. Being single and only child with no children of your own the possibility of being alone and having to deal can be almost more thah you can bear. But you have to take it one day at a time.
Know that you have A LOT of company here on the board. It may not make it easier for you to swallow. You may get very angry and feel as if your life is being swallowed up but this is all part of the life experience.
FInd the small moments you can for yourself. Yes, it will alter your life but you will come out a stronger woman on the other side.
 
Hi NJ
Some things just don't seem fair do they.
Yet we all are going to have to face this our selfs sooner or later, maybe not like what your family is going though but with the eventual ending.

For a daddy's little girl this can be very upsetting to say the lest.
From a Christian fathers point of view know that we expect to go home and in many ways look forward to that day and yes it will be mixed with sorrow for the people we leave be hind, our worries are not how we go but are our family/kids ready for it. From the little i know ( from reading your posts ) it sounds like your dad has done a bloody good job of raising you and i bet that he's more concerned about how your handling this current event then him self even if he's not saying it.

Fathers that have kids ( for the most part ) normally are worried about how the are still seen in times of trouble, they want to show that they can handle it because they know there kids are frighten by seeing there dad being venerable. It's a natural instinct.

Where is all this talk about dads going? perhapses it's time for a hart to hart with him, let him know that you still see the man he is under the cloak of old age and illness, let him know that you will be fine because he and your mum have taught you well, let him know that while you care dearly for him and want him to have his pride at all times that he has instilled in you the same pride and that it's because of him that you are there to help. ( i say this because fathers will except help more readily when they believe they have taught that to there kids, there pride is in the teaching)

you probably done the above all ready and yes it may not help you here and now that much but it will make your dad happy to know that he has done his job in this life, when a father has this knowledge it makes things a lot better for him to except what lays ahead.

I've just reread this and it may sound a little harsh?, but its from a fathers point of view and my biggest worries is the above and so of my friends that are fathers.

My wife and i wish you well.
 

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