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Pkmado

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Messages
49
Reason
CALS
Diagnosis
07/2012
Country
US
State
CT
City
Niantic
So here we are an hour from our home. Phil came into The hospital here for a PEG. He can no longer swallow his food. The Dr here specializes in ALS patients pegs. The VA in our area has been sited for unsanitary conditions. All over the news validating our decision to have the surgery do e elsewhere.
I stayed at a hotel nearby last night. To exhausted at the end of the long day before to enjoy the luxuries. When I first checked in earlier I thought, oh a pool I should of brought a swimsuit. As I passed the bar I said gee a double amaretto on the rocks before bed would be wonderful. Maybe a steak tonight with room service, I haven't had a steak in well over a year. Even if we weren't watching cash like everyone else.
I returned to from the hospital went to my room. Cracked a bottle of water sent off a group email to friends and family and passed out for the best nights sleep in ages.
Woke up and took the first solo hot shower in memory. I dressed for the day. I looked myself over. Uncut toenails (although my pals had a mani pedi ready for hospital) I have not shaved under my arms or my legs in recent memory. I hadn't even noticed. Powder my face run a brush through my hair. I have arrived, a true caretaker.
Off to take care of my guy with my fellow cals in my heart. Good day to you all.
 

Santa joe

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Joined
Oct 14, 2013
Messages
638
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Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
I remember when my Pals was in the hospital. A young dr (younger than my sons)came up to me put his arm around me and told me "If you don't take care of you - you cannot take care of him. Only come to the hospital for 4 hours. No more 10-12 hours a day for you. That's what we are here for." That was the best advise ever. The last time he was hospitalized, I remembered his words. Of course the guilt. Take advantage of this time. Sleep, relax and make some time for yourself. Trust me, it will do you a world of good.

Debbie
 

affected

Guru status reached
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I could identify with every single word! So well said!

It can be very hard to leave a PALS alone in a hospital and the staff all assure you they are there to take care of them ... not always that simple as in fact they don't understand ALS, and often can't be bothered trying to understand their speech.

How long are they keeping him? Honestly a couple of days is best - make sure the peg is well settled, no leaking, controllable pain, and you are really confident using it. They are a snap to use, come talk in the PEG forum too :)
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
959
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
Pat I know exactly what you mean about the nails and shaving. As I was giving my husband a rub down with moisturizer after his shower, and looking after his cuticles I tried to remember if I ever did that for myself. Thankfully, it is my personality to groom others, and is actually a way for me to relax. And thankfully my husband loves being touched and fussed over like he is my own personal Ken doll. My boys were probably the most preppy kids in school as I loved making their clothes, cutting their hair and making sure they were always clean and neat. I use to design clothes for them, and they wore them proudly strangely enough. One son even endured a perm at around 12 years old. I make jewelry but rarely wear it, except my wedding ring. When I go shopping for myself I end up getting something for Tim, but I just enjoy doing things for him.
That being said I have told my family that my dream gift would be a massage that required a tag team, and only ended when I cry uncle, and melt off the table.
Debbie; when my husband was at the VA I remember one of the doctors coming in to talk with Tim, and glanced up at me and had for a brief moment a look of well I am not sure what it was, but it was kind of like I scared him. Later when I went to the washroom, I saw that my hair had been partially pulled from my pony tail and looked like a horn, and I had dark circles around my eyes. I have always had to wear makeup when I went to work, as I am so pale I look like death warmed up. I was not wearing makeup that day.
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
638
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
Zoohouse-I think I looked so bad that day he didn't know who should be in that hospital me or my hubby.

Debbie
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
When my husband was in the hospital I didn't dare leave him. they said to leave because that was their job--but they didn't seem to understand that he could not roll, could not ring a bell for them, could not feed himself or pee by himself. so I stayed on the sofa in his room. I hope he never has to go back!

Pat, ask the nurses where the closest nail salon is to the hospital--while he is resting--head over there and treat yourself to a mani/pedi and a brow wax. Hope it all goes well for you hubby!
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
638
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
Barbie - I must add that my Pals was in the same hospital that his ALS is located in. He was in ICU because of a bed shortage in vent unit. We were at one time in an acute care hospital that I feared for his life so I know what you mean. They would not allow me to stay the night and that's where the 12 hours a day came from. Don't EVER want to go back there.
 

affected

Guru status reached
Joined
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Messages
14,977
Reason
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Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
How are you and your husband doing Pat?

Your descriptions are so great to read, we all identify with every word!

Paulette, your dream gift is perfect, I want it and uncle won't pass my lips for a very long time! I've never thought of a tag team massage, makes so much sense!

love all you gals
 

Pkmado

Active member
Joined
Aug 11, 2012
Messages
49
Reason
CALS
Diagnosis
07/2012
Country
US
State
CT
City
Niantic
I just don't know if I was just so relieved to emerge from the tunnel, my guy and me, after Phil's nearly starving to death waiting for the PEG to happen. The hospital debacle and then relief at being home and Phil's gaining 4.5 whole pounds and life just now getting back to normal. (Welcome to the next new normal) I took an unconscious break from the forums.
Phil is getting weaker but so wonderful to see the weight back on, color to his face. That grey complexion gone and prepping myself for the end back on hold. Of course not yet close to being ready for the last goodbye. Oh and that power recliner Phil barely used works just great for tube feedings!
Our friend convinced us post hospital to work with hospice. Of course horrified at first but have found they put us on the right track with equipment and supplies and educated us on continuing care. I am sure in lieu of Phil's improved health we will move off when we come to the end of the 30 day assessment. Medicare pays for all so it was well worth the advice and guidance with maintenance.

Wonderful neighbors, two ladies who take turns while I am working (blessed be it only part time) coming to give him his two cans of formula via PEG. Last night one sends over a corned beef and cabbage dinner for me. Truly a guilty pleasure. Phil's only intake other than formula is Hagen Daz Carmel & Sea Salt Gelato introduced as a gift from one of our special ladies. Every night his secret joy I feed us both out of the same dish. Between gelato and tapping into Amaretto to relax me, I know I am carrying a few extra pounds but what the hell. Today is a day without crisis so why not just chill.
Happy St Pats. Enjoy your dinner with a cold beer. Tomorrow is another day!

PS thoughts with meshell and her brother. A reminder to me to be thankful for our good friends and neighbors. Holding good thoughts and hope for help to come their way.
 

SMP51

Senior member
Joined
Oct 31, 2011
Messages
677
Reason
CALS
Diagnosis
11/2010
Country
US
State
FL
City
Fort Walton Beach
glad you can breath once more.
 
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