Therese Posted June 1, 2008 Share Posted June 1, 2008 Hi, I'm new to this board. I'm really scared about what I'll hear on here, but I think I'm ready to do this. My name is Therese. I'm 44 years old and am VERY happily married to Joe, and have been for the past 14 years. I come from a very big family: Mom and Dad, who are the BEST, they've been married for 58 years and are the most inspirational couple you can imagine, they're 84 years old, they've ALWAYS put God first, then family, then Country, my Dad is a Marine he was in WWII; they have 6 kids, 3 older sisters one older brother, one younger brother, and me; 8 grandchildren; and 2 great-grandchildren. Mom and Dad both have been in generally good health (except they both have painful arthritis, Mom's so bad that she hasn't been out of the house in about 6 years) till now. On April 2 Mom woke up early in the morning, passed by Dad's side of the bed, said good morning to Dad, but he didn't respond correctly at all. When he spoke to her his speech was very garbled. She said "Dad, what's wrong, talk to me!". Mom went to the kitchen, she tried to call us, my sister and a neighbor, but she was so scared that the phone wasn't working right. She put her head down on the table, crying and praying, then dialed 911. Literally, we know with only God's help (because she hasn't been in the living room in months), she made it to the front door to open it for the EMT's. They took Dad to the hospital and identified that he had had a stroke. As I'm sure you all know, it's been almost literal hell since then, with the worst part being that Mom and Dad are separated because he's in a rehab center and it hurts Mom to go out anywhere. But on 5/20 she did venture out to be with him because it was their 58th wedding anniversary. What a wonderful inspiration they are. You can literally "see" love when you see them together, or hear them talking about missing each other. Our biggest concern right now is whether we can bring Dad home or if Mom should go live in the Rehab center/Nursing Home where he is so they can be together, but then they give up their home of 54 years. Unfortunately we're not getting any clear answers at all. Dad has always been such a fighter, but he's not putting anything into his therapy at all. We don't believe that he' giving up, he just sleeps SO much. He was in the beginning but started to get a little bit of energy after the first couple of weeks. We understand that the stroke is probably causing the exhaustion, but our problem is that it seems to be getting worse instead of better and that doesn't make sense to anyone. Again, he's also getting nauseous at the slightest things (which wasn't happening before, as a matter of fact he was eating well a few weeks ago), and he's also getting more confused. We really do understand that this could be caused by the stroke but even the Drs and nurses are confused as to why he's getting worse everyday. Their thoughts are: meds, he's been on a low dose of Prozac, they're going to try taking him off of that and see if it makes a difference but that will take weeks for it to wear off; the possibility that a part of his brain was affected that we didn't realize that could be causing this, so they did a CT scan Fri and we'll know the results on Mon. He's also got a really bad tremor in his right hand and it was a right sided stroke affecting his left side, (he's actually paralyzed on the left side and can't even "pivot" from bed to chair that's why we can't bring him home yet) so that doesn't really make sense either. They've taught us all to be very devout Catholics. Joe and I have stayed very strong in our religion. I can't IMAGINE not having our Faith right now. We do understand that God has His reasons for this, but it's so hard to understand why they should be separated through all of this. If anyone has any thoughts on our questions we'd really appreciate your input. This seems like a great board where we can get the moral/mental/Spiritual support that we need from others going through the same thing. Thank you all so much and know that you'll all be in our prayers as you go through this extremely difficult "lightning storm". Therese Link to comment Share on other sites More sharing options...
Phoenix Posted June 2, 2008 Share Posted June 2, 2008 Hi Therese and Welcome to Strokenet! :welcome: Sorry to hear of your fathers' stroke. His stroke is very new and it takes at least 6 months for the swelling of the brian to go down. In the Classic Postings forum there is a post called "A Letter From Your Brain"..it is always suggested to read this as it can give great insight to survivors and caregivers...you can search it and perhaps print it out for you, your Mom and others to read. I was nauseous a bit in the beginning days of my stroke and up-chucked a couple times but then it went away after a couple weeks. It could very well be the meds that are making your Dad nauseous and hopefully it can be figured out as well as getting some answers from the results of his scan. Therapy is a very important part of recovery especially in the first year..it is a long process and can be rapid at first and then slow down but it is an on-going thing. Just keep trying to encourage him to participate in therapy...he's a Marine so there's a lot of fight in him. They started my therapy 3 days after my stroke and I tell you...I did not feel like it or understand at all why so soon when I felt so tired, weak and just wanted to sleep but the team of therapists told me it was very important to start asap to kick the brain in gear again. It was very hard but I participated and very glad I did. I stroked in January of 2006 and can move my limbs, walk around house like Frankenstein but use a cane when outside, sometimes wheelchair if going to a crowded place or long distance. My left side is very weak still with minimal sensation/feeling but I can take care of all my bathroom, toiletry needs even give myself a bath with the aid of a shower chair and shower wand, get my own food(no cooking except microwave and boiling and oven, dress myself (except tie shoes) and help care somewhat for my disabled daughter. So things do get better..it's just a long road. Your folks sound so awesome and wow!..58 years..that is something. Sorry to hear of your Moms' conditions but it's good she got over her fear and got to the phone and answer the door, the sooner help gets to a person having a stroke, the better. If the rehab center allows..maybe your Mom can stay with your Dad every now and then but I don't think they should give up their home....it's sweet that they want to be together and miss each other but for now he does need a lot of care and when he has improved he can go home but right now he is in the place he needs to be getting the care he needs...take advantage of it and this can maybe help you and your Mom and siblings prepare their home for when he does come home. This is a very helpful and friendly site. We offer our support, understanding and virtual shoulders to lean on. There are blogs by both survivors and caregivers you can read and we also have live chats scheduled..maybe you can join us sometime..we would love to have you join us and we have a great time. Maybe later your Mom and Dad (if he is up to it) can join the site to read the posts or blogs. Post and reply as much as you feel the need and ask whatever questions you may have either in a post or in live chat, groove around the board and get to know the place. You will receive more welcomes from the members here...we are here for you. Keep us posted on your Dad and again, Welcome to Strokenet...wishing you and your folks all the best. :hug: Link to comment Share on other sites More sharing options...
merichsen Posted June 2, 2008 Share Posted June 2, 2008 Therese, Don't be afraid of what you'll hear here. This is a site of survivors and caregivers, so everyone here has had a stroke and is living proof that there is hope. The initial effects of stroke are not always immediately apparent which may be why he appears to be worse now. The fatigue and nausea are part of a brain injury and extreme fatigue will be around for quite some time. Read though some of the postings and please ask as many questions as you like, we will be happy to answer them. Maria :friends: Link to comment Share on other sites More sharing options...
kanderson Posted June 2, 2008 Share Posted June 2, 2008 hi therese. welcome to this great website. sorry to hear about your dad's stroke. it can take up to 6months for the brain to heal after a stroke. new things can show up every day, that didn't show up before. is he dizzy, can he see ok, that could be causing the nausea he is feeling or the area of the brain affected by the stroke. its a shame your folks have to be separated now, but it might be for the best since your mom has health issues too. she needs to take care of herself now, (very important) since they have been together for so long. god bless them both for the loving environment they created for their family. that is special these days. someone needs to get straight answers from the doctor, makes notes or have a notebook at his bedside so any of his medical team or family can keep tabs on whats going on so everyone knows, everyone involved can write things down for you and mom. recovery is a long and bumpy road, maybe your dad is in pain and can't give therapy his all right now. or he is depressed and distressed he is putting his family through this, like he had a choice, not. we are here to help you through this. we have alot of info here to help you too. a stroke is different for each survivor and recovery is too. please learn all you can about your dads type of stroke, knowledge is power. therapy as much as he can get is key to recovery. it helps to retrain the brain. i wish you all the best of luck, and lots of (((hugs))) keep us updated on how your dad is doing, please. we do care. Link to comment Share on other sites More sharing options...
Therese Posted June 2, 2008 Author Share Posted June 2, 2008 I cannot thank you all enough for your quick and VERY kind responses. I was joking with Joe before, about 3 min after I posted my message, saying that I hadn't gotten a response yet. We figured I wouldn't hear anything for at least a few days. Thank you SO much! "Phoenix" you suggested that I read "a letter from your brain", I'm so glad I did. I cried through it all, but it made so much sense. My poor Mom has so many decisions to make because of insurance and Medicare and how long it will cover Dad's care, etc. I feel so bad for her, she keeps saying that although there are 20 of us with her at the house (sometimes at once!), she's SO lonely because Dad's not there. It's so very difficult watching such a strong man just sit there and stare at us. I will tell you though that we're all, especially at 84, saying, "how long does he have"? But as such a strong Marine, Husband and Dad all his life, maybe he'll surprise us all. All of your messages were so positive. Even if Dad doesn't have long with us, your messages made me look at this whole situation differently. Thank you. I've suggested that everyone in my family join this site. I know some of them aren't ready yet, but I will encourage it because your messages and Prayers just put a light in my heart that I didn't have there before. Thank God for all of you!! Please know that when I have more time and am ready I will read through all of your stories. I can't wait to learn more about you. Know too that you'll be in our Prayers. Love, Therese Link to comment Share on other sites More sharing options...
Guest mjh Posted June 2, 2008 Share Posted June 2, 2008 When you are putting in long posts, like on this thread, could you please try to break them up into paragraphs? I find it very difficult to follow and concentrate on long solid blocks of text. Just a polite request! Thank you. Link to comment Share on other sites More sharing options...
dstraugh Posted June 2, 2008 Share Posted June 2, 2008 Therese, Welcome to the site. So sorry to hear about stroke entering into your family. As others hsve said, it takes about 6 months for the swelimg to decrease in the brain after a stroke. The exhaustion and sleeping is quite normal. When he's sleeping the brain is healing. His meds or the medication interactions could be adding to his nausea as well. His sense of taste could also be affected. Each stroke is so different in the resulting damage/deficits it causes. As much as your Mom misses him, he's probably missing her - 58 years - wow, how sweet. Depending on his recovery, time will indicate if he is able to return home. If he does need care 24/7, the family will have to determine what is best for him and your Mom. You've got a lot of family support, which is a blessing. I'm sure you'll have many more questions as time goes on. None of us here are experts but as survivors/caregivers/families, we can offer our experiences, suggestions, prayers, support, encouragement, and virtual (((hugs))). Please let us know how everything is going. Link to comment Share on other sites More sharing options...
RLT Posted June 2, 2008 Share Posted June 2, 2008 Therese, My husband, age 76, had his first strokes nearly 3 1/2 years ago. They left him with less body control than a newborn. I was given a lot of "he won't ever ____" but over time he has regained much of what he lost. I live with the question of how long will he live all the time and I have learned that it can drive you crazy. It is better to acknowledge that he is in his end years and to live each day to the fullest. I was advised not to make any major decisions for at least a year after the stroke. It was good advice even though I didn't follow it. We were travelling in a motor home full-time when the strokes hit and at first it seemed that we would not be able to continue that lifestyle so I sold the coach and bought a house. A year later, my husband would have been able to continued our previous lifestyle. Our life would have never been the same though. That is the unpleasant reality of stroke. Your parents will likely need full-time care for quite a while if not permently. A change in where they live may be their only option in the end but as long as physically and financially able I would suggest delaying making those kind of decisions. Your father is still in the very beginning stages of recovery. During the first month or so my husband had all sorts of fluctuation. Some of the difficulties could be medicine, or more stroke activity, or just the way his body is responding to the original brain damage. The doctors do not have a lot of answers I have learned and since each stroke is so different you may not learn all the whys. Stokes are exhausting. My husband still sleeps a LOT. It is pretty common for the exhaustion to have the upper hand in the first months. Stroke often changes personallities as well. Where your father was always a fighter before the stroke may have even robbed him of the ability to be motivated at this point. It is something he can relearn though. You will hear from a lot of people how important therapy is right now. I even had one doctor tell me not to expect any improvement after six months. But in some cases, such as my husband, he was still too weak to benefit much after only a month. In his case, most of his improvement came after a year had passed. It sounds like you have a great family and that is the greates asset your father has beyond his faith. I sympathize with your mother. After my grandfather suffered brain damage from a fall, my grandmother said she felt like a widow without a dead husband (they had been married 65 years at the time). Those are strong words but are shared so you can help your mother with the grieving that she is feeling. Ruth Link to comment Share on other sites More sharing options...
myhome Posted June 2, 2008 Share Posted June 2, 2008 Welcome to Strokenet Therese, Exhaustion and Nausea are common, I kept smelling things that couldn't possibly of been there which made me sick while in the Rehab hospital. Your father's stroke was only eight weeks old, the brain takes appoximatily six months for the swelling to come down. His brain is reacting to trauma, and as anyone here will tell you each of us reacts differently to the trauma, because each stroke is different. Hang in there, and tell your father to not give up because by the sounds of it he has so much to live for. We're here for you and your family. God Bless. Link to comment Share on other sites More sharing options...
Therese Posted June 3, 2008 Author Share Posted June 3, 2008 Again, thank you all SO much for your responses. I really can't wait to have the time to sit and read all of your stories and learn more about you. I already know though that you're a great group of people. My sister is so afraid to join a support group because she's afraid she'll drive herself crazy with all of the info that she gets (she's the one who's taking care of all of the "paperwork", money stuff, insurance crap, etc). But I told her last night how wonderful it was when I got your responses last night. I told her you were all like a special little group of angels that God sent us right now to help us through this. EVERYTHING you've said has meant a lot, even the "moving this message to the right site", asking me to split my long messages into paragraphs. Those are little things that I wouldn't have thought of to do. Certainly all of the "stroke information" and your personal stories have meant more than I can say. We'll get the results of Dad's CT scan tomorrow. Obviously as I'm sure you all know my first reaction was "oh no what are they going to tell us". But as my very helpful and inspirational husband told me, we're going to have positive thoughts till we hear anything else. Thank you again so much. Please all know that you have at least one more person praying for you. You were all in my Prayers last night (as a general group last night but hopefully I will remember all your names at some point). A friend of mine said to me "is there anything good that came out of this?". Obviously it's hard at this point to find them, even though we know that God knows what they are. But at least that's one good thing that you all have, even one more person praying is a lot! And how very much I appreciate that we're in your Prayers. Love and Prayers, Therese Link to comment Share on other sites More sharing options...
arogers Posted June 4, 2008 Share Posted June 4, 2008 Dear Therese, I don't have any magic answers about the dilemma you face about your folks' future housing arrangements. I will share with you my family's story when my grandparents faced a similar situation to your folks - illness threatened to separate them after a nearly 60 year marriage. Their strong faith has been passed down from children, to grandchildren, great-grandchildren and now great-great grandchildren are being raised in the faith they demonstrated. When my grandmother broke her back the last time (she was 89 yrs old) the doctor talked with my dad and his siblings and explained to them that Grandpa would no longer be able to care for her at home. Her osteoporosis had left her bones too weak and she wouldn't be able to be up any longer. Grandpa had LIVED to care for her. When he was told Grandma needed to go to Long Term Care he absolutely lost all ability to reason. He suffered from severe dementia that had not presented itself at all prior to Grandma's injury. He was admitted to the hospital and, praise God, they were able to spend the last months together - not at home, but at the Long Term Care. They had a room together, pictures of the family, Grandpa's recliner, table and his favorite lamp. All the family visited, and so did their friends. No, they weren't "in their home", but they were together, protected, and very loved by our family and their friends. I understand your angst about your mom "giving up" her home and going to live at the facility where your dad is. For me the decision might better be made by comparing her life at her home, worrying about her husband, unable to get around well to care for herself to the possibility of both your folks living together in Assisted Living together, being cared for by professionals, with your family overseeing their care. No place is like home, but after 58 years together I'm sure that would be their first wish - to be together. Being together might also extend their lives, and at the very least provide them with the time together I'm sure they treasure. Warmly, Link to comment Share on other sites More sharing options...
bstockman Posted June 4, 2008 Share Posted June 4, 2008 Hi as some others have said, some could be some dizziness, or some could be medications,... I would also ask them to run a urine test for a UTI. urinary tract infections, especially in stroke patients and the elderly can cause some really strange symptoms... i know this is very frightening time fo you all. A home where your parents could be together might be a good solution, since your mom has problems getting around, and your dad will need a lot of help for awhile. We have Senior places here where they bring meals or you can go to a dining hall. interaction with othe seniors.. and some checking on them and there. bless your heart... your parents are very special and it shows.. they have very special children thoughts and prayers to you all, Bonnie Link to comment Share on other sites More sharing options...
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