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MaryJo

Home 2 weeks

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Dan has been home almost two full weeks and I am totally exhausted. Every body part aches and I'm tired. The last couple of nights he's been up every 1 1/2 hours to pee. He's on proscar and ditropan for urinary urgency. One night it was only every 4 hours. At least the colitis is almost under control.

 

Other than that it's going pretty good. PT, OT, and ST are coming to the house. Our insurance has approved 12 visits each thru November. He's still getting stronger and I've discovered that he can get himself in and out of bed with a slide board with very minimal assist. He doesn't like to use the slide board because he has to work harder. His stand and pivot has gotten much better also, minimal assist. We're actually getting better at car transfers. This physical therapist is great. She's offered a lot of help with car transfers.

 

He's got a dr appt with his GI on Tuesday, family doc on Friday, and urologist in 2 weeks. We went to church last Saturday, his brother was here and helped with the car transfer. We're going to try it today on our own.

 

I had home health care come in twice this week so I could do errands. They're coming in next Tuesday so I can go to the local Caregivers Support group and then a MASSAGE!!! :happydance: After one massage I've fallen in love. It will be a very expensive day but I'm worth it. I'm finally starting to listen to everyone that tells me that. :rolleyes: I headed upstairs to shower but haven't made it yet. I hear Dan downstairs so I'll go check up on him and then get myself cleaned up and my day started.

 

I'm still glad he's home. Even though I'm exhausted. I've been close, but not quite ready to put the pillow over his head!! lol

 

God bless and have a good day.

 

Mary Jo

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MaryJo:

Thanks for the update on how things are going. Isn't it funny how time just seems to fly on by. He's been home that long already. I am so happy for you both. It sounds like you have awesome people there on your side, the PT, OT, ST...... Wonderful. Sounds like he is really trying on his part as well.

 

You stated:

 

"I had home health care come in twice this week so I could do errands. They're coming in next Tuesday so I can go to the local Caregivers Support group and then a MASSAGE!!! After one massage I've fallen in love. It will be a very expensive day but I'm worth it. I'm finally starting to listen to everyone that tells me that. "

 

YES, you ARE WORTH IT. You need to nuture YOU as well.... or your well will run dry.

So, I am glad you are keeping your name at the top of the list. It isn't being selfish one bit.

 

I am so happy you both are able to go to Church. That is good for the both of you and possibly when people see you, they will come visit and help out as well.

 

All the best to you both and know I keep you in my thoughts and prayers.

 

Uupdate when you can. Keep up the good work on your being home journey.

 

:Clap-Hands: :cheer: :welcome: HOME DAN

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MJ,

 

This may help during the night? I been using a urinal for God knows how long? I take Finasteride 5mg for prostate and my doctor said for life, anyway some nights I use it a little other nights I almost fill it up. If he can hold it himself good, if not you don't have far to go to help him. I haven't ever spilled it yet but I missed the urinal one time. I guess it's not as long as I thought so I ensure I'm in it before I turn loose.

 

Now you are experiencing the real care givers life caring for a survivor, you got a little help that's a good thing. Taking time for you is great cause if you go down the deal is sealed. Enjoy your massages it's worth the time. We never qualified for help when I first came home, it was my little wife all by herself, I couldn't walk. She went down fast then as I improved and was walking she got better too.

 

I praise her now for being there for me in the early days of my recovery. Now I have in home care two days a week paid by the VA, that's been a blessing too cause I'm not as stable as I once was a few months ago. My prayers are with you and Dan that he gets better and you are not hurting much that a massage can't fix.

 

The old saying is...It gets better with time once the excitement is gone. Then your other excitement will kick in and it's honey moon all over again. I been there, done that! :nuhuh: **smack!** :secret:

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I've had the most awful day today. It started with me deciding to do our first car transfer by ourselves for a short trip in the car. He stood up ok, held onto the door with the window down just fine. Then he pivoted before I was ready and tried to sit in the car before I was ready. Disaster!!! I couldn't get him up so I called 911. In about 5 minutes I heard sirens and I just prayed they were coming to my house. They sent the local fire truck plus the local EMT unit from the fire station. About 5 able bodied young men and one young woman got Dan out of the car into his chair then brought him into the house and into bed. I was so shook up I couldn't stop shaking.

 

He rested for about an hour and then the fun started. He has had the most incredible diahrrea I've ever seen in my life, for almost 3 hours now. I'm up to my elbows in it. :yucky: I feel so bad for Dan and I feel bad for me too. The first time it was before he knew it and we didn't have a chance to get the bedpan. Now he's on the bedpan for 20 minutes and off for 10. He has a G tube and gets Osmolite nutrient 4 times a day and it's time for his evening "meal". I just called the on-call nurse for the skilled group I've contracted with. I'm going to skip the evening nutrient and give him a little water so he doesn't dehydrate.

 

Sometimes it seems like one step forward and two steps back. Thanks for listening, I just need a listening ear right now, maybe a pity party. Think I'll go cry a little, maybe take a hot tub bath after Dan settles down.

 

MJ

 

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MaryJo:

 

We are always here for you, so when you have an up day or a down day, you post about it. Please realize you are part of our SN family here. We care about you and Dan.

 

Have you thought of having him wear diapers? Like Depends? I am a Brain Stem Stroke Survivor and due to the deficits I have to wear them. I call mine: "Big Girl Pull Ups." I get them from HDIS.... I get them sent out to me monthly. It has taken me almost six years but I can go without having to change them so much during the day. I also have a form of Muscular Dystrophy and I have muscle control problems as well. So you put the damage from the Stroke deficits and the MD..... I am happy this type of help is out there for me. Also, do you have a bedside commode for him? I know when I got home from Rehab, we had one waiting for me here. It helped so much in the beginning. We also had baby wipes sitting right by the bed in case we needed them. You know I have a Bidet and that is a God Send as well, because when I did have an accident, rather than have to take a whole shower, I would just sit on my bidet and let that clean me up. It does an awesome job. Just a thought.

 

I am so sorry the door handle didn't help you. It truly was a God send for me. I guess it depends on the type of car and door. I had used it on a Mercedes, Honda, different vehicles when people took me to my appts. in the beginning of my journey. I know other people have gotten one and said it helped them.

 

We want to lift you up and listen so please don't ever hesitate to post. I hope your evening gets better. I will keep you both in my prayers.

 

:forgive_me?:

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Mary Jo,

What a day.

I am glad to hear that you are home and doing well.

Well, diarrhea, is a mess. I've had that too. It is horrible. But, it will pass.

 

Keep up your spirits. You are doing great.

Ruth

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Mary JO:

 

wow what a day. you caregivers are real angels in disguise. I sometime wonder maybe survivors have it easy than you caregivers. but as Ruth says this will pass too. Ipray for easier days ahead.

 

Asha

 

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His diarrhea finally settled down around 9pm, a few bouts thru the night. We have a bedside commode but, because of the left paralysis he can't really use it. We tried once and I had to get him back into bed to clean him up. He wears disposable briefs with tabs at night and I've just started using the disposable pull-up briefs during they day. They're much easier to get up and down when he's using the toilet than the tabs.

 

Thank you all for the replies and support. This group is the best. There's no one but me and I don't complain to Dan, well, I try not to. I have on occasion told him I was exhausted and that he needed to try to help me more when I change him. We have our words. It takes him 1 1/2 hours to take his morning and nighttime meds so I've finally given in and I give morning and bedtime meds thru his G tube.

 

The cry and the hot tub bath helped. :D Today will be better than yesterday. It's a beautiful, sunny, warm November day in Central Ohio.

 

Hugs to all. Mary Jo

 

 

 

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Mary Jo,

 

As you've experienced, there are good days as well as bad days for survivors and their caregivers. Over time, the good days will increase as the bad lessen.

 

There will even come a time when you will laugh about the things that had been disastrous at one time. Honest. We're here for you, understand, and send virtual (((hugs)))

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MaryJo, you do get used to it, the routine, the nights of broken sleep, the fact that is just you and no-one else. Like me you will learn to put a bright smile on your face and say: "Doing well thanks and you?"

 

I'm praying Dan can help you more once he realises that there is no-one else on staff and you need him to move side to side, maybe hold something for you. When Ray was dependent for a while I reminded him that he did have one fully functioning side and he needed to keep that strong to remain at home. As you know we have a shower nurse three days a week and that really helps too.

 

Find a routine, hour by hour day by day. Do that for a couple of weeks then start to vary it a bit. It doesn't pay to be too inflexible but it does pay to know where you are in the day and what needs to be done. If friends come by and ask if they can help ask them to do a small grocery shop, fold clothes, do some small task so they feel "helpful" rather than in the way. It is hard to make that change in relationship when your friends suffer some kind of adversity but it can be done, I know because I have been on the giving and receiving side.

 

(((Hugs))) from Sue.

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hi maryjo, and i am so glsad to hear that dan is doing well that is really good news, and that dan has been able to come home, and dan will keep making progress all the time mary jo, keep up the good work maryjo i am glad to see that things are really looking up for the both of you, i love to hear happy stories anout stroke recovery thank you maryjo, and let me know how you and dan are doing

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Mary Jo.

The beginning..is the hardest. It will get easier. Just give yourself time. It is taking alot longer that I had imagined. But, I know that with more time it will get better with my husband. He is still interested in new things and knows that routine is not one of my better suits. I love to change. But, honestly, Yes, I have a routine with William.

I was so elated when after 2 months, he graduated to regular food and we did not have to use the thickener. Yes , even the muscles of the mouth and throat will get stronger. Things just take time.

Eratic sleep for the caretaker is par for the course.

You are doing so well. I am proud of you. Just hang in there.

Ruth

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Guest faithycan

 

I am so glad your taking care of yourself and letting yourself have me time. I unfortunately never did that when Tom was home. But your hubby seems much better than Tom did! Praise the lord. Now that Tom is in the nursing home, and a great one at that, since (3/09), he is declining a bit, but he has great help and is taken care of. I go and see him after work and on the weekends. At least I know that if something happens to him, they are right there to help. I could not do it anymore. I gave him the best care possible, and he still got pneumonia and declined. Count your blessings.

 

 

Faith

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I gave him the best care possible, and he still got pneumonia and declined. Count your blessings.

 

 

Faith

 

Faith,

 

I'm so sorry to hear about Tom. I'm sure you gave him excellent care. I truly do county my blessings. I'm finally accepting that there are thinks that I can't control and that I need to make the best of what we've got.

 

Best wishes to you and God Bless.

 

Mary Jo

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Mary Jo,

I'm so gald that Dan is improveing. I am also gald that you arer taking time for yourself. It's inportant to do this.

 

 

Bruce Schwentker

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