The hits just keep coming

[lisas]

Thank you everyone for your thoughts and kind words. :friends: It helps make me feel better knowing you are all out there listening and sharing your stories. :2cents:

 

We are waiting for the cardiologist to talk with Rachels doctor. I will keep you posted as we learn more. Rachel is aware of what is going on. She says to go with the doctors. I'm not sure of her total understanding, but we will go with our hearts and prayer.

 

Charmin, I will pray for your son. I know the struggles you yourself have met with that alone. :friends:

[arogers]

Andi,

 

What a relief you must be feeling! I know you need all the strength and energy you can muster right now as you care for Steed, and the added emotional pressure of imagining a health problem of your own just serves to drain the energy, doesn't it?

 

Bless you as you forge on!!

[arogers]

Lisa,

 

The God of my understanding is big enough to handle any of our questioning! Sometimes we have to go through the questions before we can come to any peace about our decisions. You are so right to go with your heart and prayers in your situation.

 

Also, if Rachel says go the with doctors, maybe that's an answer to your prayers?? I think sometimes God answers our prayers in ways we don't always understand!

 

I'm praying for your peace in this.

[Ruth & Bruce]

Thanks to all for your well wishes and prayers. Bruce did very well and they even sent him home by 1:30 that day. The Dr. said he removed some scar tissue, old stitches and that the tear was 22ml. long and he stitched that up. We went to post op the following wednesday and he started therapy that friday. It's a little stiff but he doesn't have "that" pain anymore. He's taking just Advil for that.

We were lucky to have my son and his family come in for the surgery to be with his Dad and I as we were were having stroke flashbacks and it was comforting to say the least. But 5 babies under 5, 6 adults and 2 dogs , (one sick dog, 3 sick kids and a husband recuperating from surgery) made things a little hectic for me! I'm happy to be back to work and hopefully put my nursemaid degree back on the shelf for awhile.

So it's back to normal, whatever that is, for us. I'm trying to catch up on all your posts and blogs to see what's going on in your life that I missed.

Thank you all again!

[lisas]

[font=Comic Sans Ms]Hello Everyone, :chat:

 

As all of you know, I posted a topic on Rachel receiving a internal defibulator because her pumping infraction is so low. Well the doctor wanted another echocardiogram done on Rachel, and her pumping level is up to 40%. :Clap-Hands: :cheer: :Clap-Hands: It's still somewhat low, but at least it's improved. Actually, it's improved since her stroke. She started a new heart medication-digoxin, after her stroke, and it seems to be helping. :cheer: She also quit smoking in December, so I'm sure that didn't hurt either. :big_grin:

 

I am thankful to God for even the smallest bit of hope. It was Rachel's CHF that probably caused the stroke to begin with, so for now, we will gladly take the improvement. :cheer:

 

The doctor said we will rerun the Echo somewhere in the near future. We may still need to do the defibulator at a later date, but for now were celebrating the good news. I know we have to take the good with the bad, bout for now the good news overpowers the bad times. :hug: Thanks for all your responses. :friends: [/font]

[Guest ellingtonduke]

 

I am new at this chat site and registered just a few moments ago. Does anyone have some advice for me...? My husband had a stroke on July 17, 2006. He has been in the hospital recovering and doing rehabilitation. He has been home recently on Saturday's and Sunday's. He is able to walk and has recovered quite well. He has also quite smoking and we are trying to eat more healthier. My main concern tonight is that he has had a surgury to clear out his right carotid artery. He had the surgury yesterday. He has come home now and is doing well. He rested this afternoon, but is running to the bathroom frequently. I thought after awhile he would stop, but I think the bladder is overactive. He is on detrol but has just started taking it again since being home. How long does this prescription take to help with the constant running to the bathroom, or using the urinal? I am not getting any sleep. I know it sounds selfish, but I need rest.

[tdehaas]

Are you serious? Is this a joke? This is Tom's wife and he told me about your post while I was in the other room. Normally I don't respond to things on this site because this is my husband's domain but I feel compelled to respond to this. I'm really shocked by either your ignorance or selfishness and sorry to have to tell you that honey you have a long road ahead of you. When Tom first came home from the hospital I was just glad to have him home alive much less worry about his middle of the night bouts of me retrieving a plastic urinal bottle for him to urinate in. Support and love will carry your loved one further (in my opinion) than complaints of selfishness will. Put yourself for one moment in your husband's situation and imagine your ordeal. I'm going to have to end here because my contempt for your selfishness will only make me type something that either I will regret or offend others who normally don't deserve to hear what I have to say to you.

 

Jenny

[arogers]

I think maybe you should look wthin to see if you may be stressed by the reality that your husband has had a stroke. It sure is an adjustment and along with him returning home comes alot of responsibility and stress on your part - there's no denying that.

 

However, a few things struck me with your post.

 

1. He had been coming home on week-ends but you don't indicate there was a problem then.

 

2. He has been home less than 24 hours - not nearly enough time for him to even adjust to being home.

 

3. I took Detrol at one time - not for frequency but for urgency. In other words, when I had to go I had to go. It helped with the urgency situation. I don't know how it would for for frequency issues. There's sort of a common suggestion here that with men and frequency issues (any type of urinary issues, really) it's a good idea to have the prostrate checked.

 

4. I have struggled with exhaustion due to my husband's night-time restlessness. However, it was some 14 months post his first stroke, and he'd suffered a second. It really is a little early to be too concerned about sleep deprevation before the end of the first night.

 

Maybe you should see your doctor about some medication to help you cope with your new role, and the concerns and fears that accompany your situation. There are many medications out there to help you relax. When your husband naps during the day, you take a little rest too. Our bodies are amazingly strong. There isn't a quick fix to stroke recovery.

 

Hang in there.

 

[jriva]

.

 

Elleningduke,

 

Not getting enough sleep is a common caregiver problem. My husband is over six years out from his stroke and it's only been in the last six months that I've been able to get more than a handful of hours of sleep each night. My husband is wheelchair bound and it took a long time for him to be able to get up in the middle of the night on his own. So I do understand the frustration you are experiencing. Lack of sleep can make people very cranky. But it was the stress of dealing with our whole stroke situation---has Ann points out---that was keeping me awake the most.

 

Have you tried putting several urinals by your husband's bed side to use in the middle of the night so that you don't have to get up so often to help him? Not the best solution because they accidentlly get knocked off on occasion, but it does help. I used to put a folded, old towel down in the 'spill zone' in case this would happen and it did a few times. If your husband is able to walk I'll bet it won't be long until he is able to make the nightly trips to the bathroom on his own, without waking you up. If just the noise of him getting up wakes you up, try ear plugs. They've been my salvation these past six months. (My husband snores loudly and I'm a very light sleeper to begin with.)

 

There are some topics in our Ailment forum on this issue. You might want to look them up. If you do, be sure to look on all the pages, not just the first one.

 

Jean

 

[swilkinson]

My husband Ray is seven years past his major strokes and I have been his caregiver for all that time. He too had continence issues both frequency and sometimes urgency. The way I see it is similar to what Ann said:

 

1) If you are a caregiver you are there for the good and the bad. The good is seeing the progress your survivor makes, with exercise, good diet and a boost from others he will make good progress. The bad is the things that will rob him of that progress, maybe other illness or plain old discouragement. The caregiver also becomes the cheerleader and life coach.

 

2) There is no quick fix for stroke. No matter what the doctors say will fix the stroke, things are never 100%, there are marked changes. Sooner or later you get to a "new normal" sometimes it is much later. The caregiver learns patience the hard way or gets a lot of bruising from banging her head against a brick wall. You have to learn what can be changed and what you just have to put up with.

 

3) We all get accused of selfishness. Sometimes Ray says I don't understand. He is right, he is the survivor, I am the one who cleans up after him. We all have our frustrations and need to deal with them as best we can. But we also have to learn to be patient as the survivor recovers by baby steps with you at his side. It is painful to watch someone you love go through this but we are here to support you both.

 

If you are tired take a nap when you can. For a while you might have to wake up and help with the urinal etc. You will get used to it. Incontinence can be an ongoing problem. Ray's is. He is currently having tests to see if it is his stroke damage, diabetes or dementia which is causing it and eventually I hope there will be something to relieve the problem. Mind you I am not holding my breath.

 

Welcome to the site, just take some time to read all the posts from other caregivers and from survivors. You will find that some of your questions are answered here. Others you will have to research on the net or ask doctors or health professionals for help.

 

This is a long journey and we are all in it together.

 

Sue.

[bstockman]

Well if he just had surgery he was probably given quite a few IV's the body is tryin to get rid of this excess fluid right now and can take a few days. Is he on blood pressure medication that has a diuretic in it that will make him go more frequently. I make sure I take my BP meds in the AM.

Also have his prostate checked,as men age their prostate enlarges and cause frequency. My husband is taking saw palmetto a natural herb. You could ask the Dr. if it would allright to take this with his other medications.

 

You will need to learn to take naps or whatever, but 24 hours is a ittle soon to be getting upset. Many caregivers here have learned to adjust to interrupted sleep.

[fking]

Ellingtonduke,

 

I just want to welcome you to a terrific site for all kinds of information. I was in the same situation as your husband when I came home after 4 months from a stroke. With his recent operation near his heart, I would think he is very weak which in turn will affect his bladder too.

 

Although some hospitals send you home early after operations, he probably could have benefited more by not being discharged the next day after his surgery. At any rate, as his caregiver and round the clock nurse, maybe you'll have to sleep when he does for a week or two.

 

The nurses came into my room several times a night to empty my urinal. So, you'll kind of be doing that job for a while. You may want to ask his doctor (who knows his condition) how long for the med to take effect. A lot probably depends on his health and age too.

 

Hope we've helped you some as we are not doctors, but have experienced many situations as caregivers and survivors. Hope you read all the replies to know you are not alone in caregiving. It's a very hard job at first.

[Yelyena]

Oh gawd would I be hurt to hear this. I an SOOO self consciesce of being a frickin' BURDEN and I take care of myself. If I heard this from my life partner I'd want a divorce!! I'm reacting here. sheesh though read up on the details, it CAN get worse. I was incontinent and vomited non stop for 24 hours. :Dr_Evil:

[Guest MelBaker]

Ellingtonduke -

Wow - I bet you didn't imagine that you'd stir up quite the firestorm that you got....I was a little shocked at the vehemence myself.......usually people here are quite helpful nd very cordial - I thnk you may just have hit a raw nerve - my apologies....

You asked for help - my suggestions:

1. As Fred (Scooterman) indicated, it would be a good iea to have several urinals or even a port-a-potty near the bed to lessen his time of doing the action and making a disstraction for you..

2. I would also invest in some "Depends" for men (more padding in the front) - even though I am 5 months out and have not had any surgeries or any real issyes with my bladder (TG!!!) I do have occasional problems with muscle controo - so I wear the depends when I know I'm going to have a sressfulor long day - and at night when I know I am just flat out exhausted..

Other recommendations: cut out his caffeine (ALL OF IT) and try not to have him drink too much in the hour and a half before he goes to bed - this works well.

Go to see your doctor and ask for help with your depression an sleeplessness (there are newer meds that are not as ddictive.....

Whatever you do, please don't let your survivor know this is bothering you in the fashion that you did here - it will make things worse as he is probaly already irritated and embarrassed enough for the both of you.

Good Luck!

You can PM me if you need anything.....

[lisas]

:welcome: Ellingtonduke,

 

STROKE changes everyones lives. Caregivers and victims alike. It's only been a very short time though. You should be thankful your husband can walk and is doing as well as he is. Many people here aren't even as far as your husband, even after several years.

 

My daughter Rachel stroked 2/17/06. I stayed in the hospital with her for 56 days with very minimal sleep. If I had to do over again, I would do the same. You do what you have to do. I would pray to God, to give me the strength for one more day, and he did . He gave me those 56 days and then some. :big_grin:

 

Rachel is only 22. She can walk only short distances with a quad cane-otherwise uses a wheel chair. She can't use her right arm at all. But you know what, she's here. I thank God for that everyday, since doctors told us she wouldn't make it.

 

As far as the urinary problem, it could be temporary. Rachel has to take Lasix daily to get rid of fluid build up in her body. She has CHF. Without the Lasix, she Fills up with fluid. That has happened twice in the last year. We almost lost her then. So, if we need to take her to the bathroom several times a day, then so be it. You do what you need to do. :2cents:

 

I'm sure you will find what works for you and your husband. You will find a routine, and start living life. :friends:

[spokangie]

It seems forever since I have been on this site..It has been a very busy spring and summer for us. Lloyd is doing well but after 8 months of no seizures he had one in June..Probably because of medication changes, he was taken off one and placed on just Lamictal twice a day..so far so good we are going on two months post seizure..

 

I have had to have gallbladder surgery last week, but found out that there were no abnormalities or stones, there was an underlying problem, they hope it has been resolved..

 

Then there is the big event, one that no one hopes that it will happen. My mother had a massive Posterior pressure stroke on her right side. Dr's said that her whole right side is gone..She has short term loss memory, thankfully can speak, has no paralysis. I have noticed that she has slight jerky movements on her left side..It is very frustrating to her not being able to remember, she is not cooking ay more, she loved to cook. Someone has to be with her when she does to make sure that she turns on the right burner. From time to time she remembers names or dates. This is most frustratin for my Dad he is 84 and it has taken a toll on him. He has broken down on many occassions and cried like a baby..He feels that he has lost his best friend, he cant understand why at their age they have to loose each other.

I have tried to explain to him that she is still here but just a little altered ,and to enjoy the few years they have left day by day..

Her constant questions and affirmations that she is doing something right is getting to him..I have family that have busy lives and unfortunately they come last on the list..They don't want to hire a caregiver I don't think that they have that luxury.

They definetly need someone there to give my dad a break from mom..

He loves her dearly and has said to her many times that he will never send her off no matter what happes.

My mother is at risk of another massive stroke. Apparently her stroke was due to her ireegular heart beat..I think it was because her heart specialist told her to stop taking cumading for two weeks. I hate it when Dr's play games with peoples lives, he told her she will go on a smaller dose in two weeks but he wanted to see how her blood pressure was without it, he felt she didn't need it..

Well not even a week later she had the massive stroke, bet he feels like an ass now..Her GP was furious when she heard this. She is back on cumadin now and is monitored closely..

She was supposed to be in Rehab for two weeks but would not have any of it, so she was let go home, against the Dr's advice..

This comes so close to home, I have Lloyd to take care of and feel helpless that I can't be there to help my mom out too. I understand her feelings of inadiquacy her fears..You know the saiying "been there done that" But to do that I have to hire someone to come and take care of him..

It is bad enogh that I had to get a caregiver for 24hrs when I had the surgery..Our income is small and every penny counts..

 

On top of everything they are not equiped for handicaped and taking Lloyd with me means leaving him sit outside on the porch..

They purchased a mobile home in a senior park but it is not handicaped accessible anywhere. I have told my dad to prepare the house in case she does have another one, if she does and survives it she will need it to be modified..I pray to God that she doesn't, but all signs are pointing towards something, it is not if but when. Dr's think that she will not survive it because of her heart conditin. She will be 80 in October, she doesn't think she will make it that long..To be honest I don't think my dad is doing that well either, his health is deteriorating fast too..

 

I look at my mom and than at my husband and see the helplesness and pain in their eyes, my mom more so than my husband..I think he has made peace with whom he is today..My mom has a long way to go before she is able to accept who she is now..I think the hardest thing for my dad is her wishing that she dies and that it happens soon, she is terrified of another stroke and what it will do to her, she just wants to go..

That is the most painfull and agonizing thing to hear for us let alone her husband..

Well that is it for now, we will take it day by day, whatever happens it is in God's hands now..

Thank you for letting me express myself..I don't think anyone else understands as the members on this site.

:groupwave:

 

Take care

'Angie

[givincare]

Angie,

I am very sorry to hear of your mom and dad's struggles this summer. I guess it says alot about how difficult it is to be a survivor when they hope not to survive a second one. I hope that is not something you or your mom ever have to face again.

 

Glad to hear things are going well so far with Lloyds new medication, I have unfortunately learned how hard and scary seizures can be...HERE'S TO NO MORE SEIZURES!

 

Take Care,

Kristen

[Marnie]

Angie firstly let me welcome you back :hug:

 

 

I am just so sad to hear of your most unfortunate circumstances right now, you must be exshasted. I mean you going through surgery for starters but still need time to recover.

 

 

So pleased that Lloyd's finally getting there with his new meds long may it continue, hopefully no more seizures!!! As for your Mum I am sorry to hear what she and all of you are going through.

I pray that you will all be strong and get through this saying prayers for you and your family right now friends: Remember you cant do everything Angie and you need to look after yourself to :hug:

[jriva]

.

 

Welcome back, Angie. I'm sorry to hear that you had such awful reasons for staying away! Sorry to hear about your mom. It's SO hard to watch parents go through this sort of thing.

 

I'm glad you finally was able to get your surgery and the Lloyd's got some medications that seems to be working.

 

Jean

 

[bstockman]

Hi Angie, have been thinking of you, wondered about your move to Ferndale, So sorry to hear the news of your parents.

Sorry to hear of Lloyd's seizure in June, hopefully the change will be good and last a long time.

 

Has your dad ever been in the military? They may qualify for some home care for them.

 

Hope you are feeling much better since your surgery.

 

(((((((((((((HUGS))))))))))))))) and warm thoughts coming your way

Bonnie

[omgirl]

:cheer: My husband (3 years post stroke) and I have just begun to take care of my 71 year old father who had a stroke in May 2006. His urinary frequency problem (at night) has been delt with by keeping a table with a urinal and a bath basin (like the one from the hospital) at his bedside. He empties the urinal in the basin each time, so there is no overflow problem. We then just empty the basin in the morning. We use a pad in his bed in case of spills. On average we only have to wash his sheets 1-2x/week.

I must say I am rather disappointed by the rude replies, accusig you of selfishness and such. If you were selfish you would not be doing everything you are for your husband. This is my 2nd go around with bringing a stoke survivor home, and I'm still overwehlmed at times. Hang in there and e-mail me thru the website if you need love and support.

YOU ROCK!!!

Omgirl

[jwatrous]

Talk to his doctor and get him some meds to control the bladder -

I am female, have had a stroke @ age 39 :Tantrum: m but now being 61, I have bladder trouble, which has been been helped greatly by enablex - but let the doctor decide which med is best for your hubby

June :blush:

[swilkinson]

If you're going through hell, keep going.

 

Winston Churchill

 

Ray and I have had a lot of ups and downs in our stroke journey together over the last seven years. Initially all our energies were put into his rehabilitation, his exercise program, his physio, sorting out his medical problems and getting him on the right medications to prevent further strokes.

 

His falling and breaking his hip twelve months later, followed by his next stroke a year after that taught me one big lesson. It is no point in sitting back as a survivor or caregiver and feeling sorry for yourself, you just have to keep on going. And as each new difficulty develops you have to use what you have learned so far to overcome that one too. One of our Prime Ministers' said:"LIfe wasn't meant to be easy." And he was right.

 

If you are stuck right now in a place you don't want to be how do you do this? Well, my advice would be to do some research. Find out what others are doing. You can look on the net, ask at health care centres, ask people you know who are in the same situation. Talk about your condition to everyone you think might be able to help. Just talking about it honestly and openly will be a help anyway. People don't need to know every detail, just what you want, and how they can help you.

 

Secondly, make up an action plan. This means listing all the resources you have and how you can use them. Lack exercise equipment? Maybe put an advertisement anywhere that has a section asking if anyone has some equipment they want to give away. Our exercise bike on the front verandah came to us that way. Ray's first wheelchair was donated to him by the mother of another young chap who had just died. People do have equipment to give away.

 

Thirdly start putting the action plan into action. I hear a lot of people say they want to get better but don't seem to think it is up to them to do anything about that. It is up to you. I can tell Ray what to do. He chooses how much he wants to do. Nothing else can help your muscles improve like exercising them. Do some simple movements, then build up the numbers you do each day. Swimmers who were put in the pool as kids to get them through asthma attacks can turn into Olympic medalists. Why? Because they keep on repeating the same movement until they are the best at it!!

 

Lastly study all the forums here and join in the discussions. Look at the blogs too and post your comments there. Don't just read what others have written, share your experiences too. To feel as if you belong you have to participate. There is a lot of information here, many people have been where you are now and know how you feel so let them support you and help you through.

 

If you take charge of your own destiny it doesn't seem as if life is hell, just take courage and keep on going.

 

Sue.

 

[jwatrous]

You have a great perspective on this issue, as I am a 20 year survivor, and it is like being in hell, just in adjusting to it. But, as the years have gone by, I have focused more on school work, my family, and have not wasted any time in pity parties

I hope you both continue well, and that besides your health improving, that your attitude remains the same, as "ATTITUDE IS EVERYTHING"

 

June & welcome to our web site :welcome:

[fking]

I welcome your very first Chat Hostess post. I congratulate you personally for volunteering your valuable time between Ray and this message board.

 

You got the courage, will make the time, and certainly have been thru hell enough that you can tell others and they will look forward to the trip.

 

Keep on going Sue!! You have outlined a great road map. We are behind you all the way...