Follow
Share

Things are so bad right now, I don't know if I can get through this....tooo many details to explain but it is so very hard right now.

This discussion has been closed for comment. Start a New Discussion.
Thank you dear lady (twopupsmon). I appreciate your encouragement.
(0)
Report

oh you sound much better, I'm smiling for you! If only I lived on the west coast I would certainly try to help you any way I could, just ignore some of the statements made, you are not stupid, if it takes a drink or two at the end of one of your days then so be it! I'm familiar with the freeways you mentioned, quite a nightmare! I also agree with you on what you would do knowing you had a fatal disease, hey they shoot horses don't they, I believe in the back of every caretakers mind, sometime, they have thought there must be a way, please God take him before it gets any worse, especially in the case of spouses. Take care you are handling this the best you can, and i for one am pulling for you.
(1)
Report

Ok, gotta get ready for, yet, another day of fun fun fun
(1)
Report

By the way....when I, or my 2 caretakers are there, we always manage to care for him without him freaking out because we move at him slow, do not jerk him around, and are very patient with him. The hospitals are understaffed, under trained, and have become apathetic toward the patients that give them problems
(1)
Report

Two pups mom. I have decided am going to keep him at his current convalescent just to keep from moving him too many times and hope to get him a wonderful board and care (with a caretaker if necessary). If that doesn't work, I am going to try to take him to a local dementia care unit at one of three assisted care facilities near me, then I will take him to UCLA if that does't work (that would be my worst case scenario because o the horrible drive on the infamous 405 freeway with can take and hour or hour and a half with traffic . No, I take that back, the worst case scenario would be to bring him home. Las time I did that I had to call 911, and the care taker company would not come back....sissies lol
(1)
Report

Ohdear. Even with my drinking, I manage to be at my husband's side every single day with includes a half hour drive in horrible traffic on L A Freeways. That last two days I picked him up, drove back to our town for doctor appointments , and took him back to the hospital and then home again in worse rush hour traffic. I have a very good caretaker with him from 8-12, I am there from 12-4,5, or 6, and another good caregiver from 4-8. I monitor his meds, make sure they use his special soap on his poor dry skin, and have either me or a care taker go with him when they give him a shower. I am his advocate which a dementia patients needs because they can not tell you if they are mistreated. I have a broker looking for the best place for him close to home (currently hoping to get into one that I liked far and above the others). The doctor running this 6 patient board and care is opening another in the next couple of months. There isn't a day that goes by that someone tells me how wonderful I am with my husband and they hope they have someone like me if they get sick. You are right about one thing...if I don't take of myself, something could happen to me (stroke, heart attack etc) and then he would really be in trouble. My husband would be appalled at how I am neglecting myself if he were aware. A doctor told me that John's is a very unusual situation having Lewy Body and being so healthy after years of doing and training for triathlons, 3 Ironman competitions, and going to the gym most days for 2 -3 hours. This creates a very strong dementia patient. I have already decided to STOP drinking at night, last night being the first. Now, I am not sure how old you are but if there is any way you can get or afford a long term care insurance policy, JUST DO IT....This is the one thing that can keep you from going bankrupt if you ever have a serious illness, especially dementia. I am paying thousands of dollars right now, just to get through the 90 day elimination period, but then it will kick in and save us. Sure if you can afford it, and assisted care facility would be a great place. They cook your food, clean your clothes, clean your room, take you to the doctor etc. I don't know if you have looked into it, but they are very very expensive. Personally, if I was ever diagnosed with a serious, fatal disease, I would do myself in a heartbeat, before I put my family through this. Sorry, didn't mean to write a book.
(1)
Report

Photo, Shaking has it right, take him to the UCLA ER, they will get around that waiting list and get him to the Psych area, if they try to tell you they cannot keep him, stand your ground. Face the fact that no hospital wants healthy dementia patients, all the new ads on tv promote " take care of your loved one at home" easy to say until you have lived it. So go there and make them listen, if you don't take him out of the ER they have to keep him, isn't that what we all pay insurance for, this is an epidemic, they have to start responding to the caretakers, this will be your only way. Please take care of you also
(0)
Report

I do believe many of you have hung in there way too long out of guilt and obligation. Step back and try to be more objective. Would you continue to allow a depressed emotionally distraught person who has developed a drinking problem and / or is taking tranquilizers to cope with their unbearable life to come in your home on a daily basis and take care of your loved one ? If any of this describes you , than my opinion is that your loved one needs other placement ;if you in addition to yourself do not have a team of people ,who are willing to be organized to help you out.
These posts has helped me make some descions for my upcoming advanced senior years. I am going to start looking, and choose a continueing care community. When I find myself at a point where it has become difficult for me or just plain not smart to remain in my home than I will check in. I will have peace of mind, activities to do as long as I can do them. If I have sick days can be transferred to the part of the facility where medical care is given and my direct care will be done. Once better can return to my apt. It is peace of mind knowing that whatever my health status is their will be an area in the same facility that can take care of me. I do not want to rob any well meaning loved one of their life, peace of mind and liberty. This would not work out well for either party. Also if some of your loved one's mind was not so clouded by dementia etc.they might tell you the same. Have you ever thought about what your love one would want for you or themselves seeing the state of affairs with your life and theirs at this point ?
(0)
Report

Thanks guys; I appreciate your shoulders. I am just trying to take it a day at a time and working with my broker who is working hard to find the right place for him. Bad days and not so bad days lol
(0)
Report

Photoartc, warm hugs to you. I have no suggestions. Just empathy and well wishes for you.
(1)
Report

Ok, it got worse lol. My husband picked up a bug at the stupid convalescent hospital and now has horrible diarrhea. They put a container in front of his room that indicates he is isolation. I look down the hall and see a half dozen of these containers. So,obviously, one of the workers are not washing their hands and passing the bug from room to room today. I HATE CONVALESCENT hospitals. They changed my husbands meds for his tranquilizer from Atavan (bad) to Klonipin (better), but the pharmacy did not get it to them today!!!! Seriously????? He apparently put the hospital in overdrive because he went crazy, screaming, throwing their files all over the place (they had him with them at the nurses desk) they were dodging files and it took 4 people to restrain him. Luckily, I had the Klonipin with me and gave him 1/2 in am and pm and he was calm. OMG....they are going to kill him. Where am I going to put my poor husband. He has been denied two convalescent hospitals, and one home health care agency so far. I am strongly thinking of UCLA geriatrics physc ward but there is a waiting list. I am lost.
(0)
Report

Long long story about meds but constantly working on meds to get the right mix. He was admitted to hospital 3 times, 2 falls, and an allergic reaction to antibiotics and so this is his 3rd stint in a third convalescent hospital. The previous 2 would not take him back because he has to be watched every minute and can be combative and is very strong due to his years of physical training due to his triathalon and Ironman competitions over the last 25 years. How ironic he did all the right things so now his body is totally healthy, low blood pressure, not overweight, etc and his mind went. He was smart too...he had his masters. Horrible disease!!!!!!!!!!!!!!
(0)
Report

so glad to hear your words Photo, been very worried, If they make you move him from this home, take him straight to an ER, they will admit him, & strip all the meds out of him & get him settled down, ask for Psyhc review, and push to have him transferred to a facility that will concentrate only on trying new meds to get him stable and able to take care of at home as it may very well come to that. If you don't go the ER route Medicare will not cover it. It like Tough Love, you have got to do something or it's your demise we will be mourning over, a drink or two to ease you in the evening is fine, I did the same with smoking went back full force when this disease set in, but my Dr put me on low dose Prozac & Xanax low dose when needed, it does keep me under control, please please try you know that's how I did it with my husband that last Fall was ready for an asylum but 31 days in that med transition center he came home in December it's now June and all that hateful stuff is gone, he sleeps 12 hours at night, wide awake during the day, pleasant & helpful, the Dr at that center told me, you have to help get through to him while he is here, hug him love him, sing to him, inside he misses you, his home, dogs, and life, I did all that Nd more, every day! Don't give up please.
(0)
Report

I am not religious, but bless you guys for your support. I am driving a half hour drive to be with my husband at a convalescent hospital, yet paying $15 an hour for home health care because he is so hard to take care of. He is no longer welcome at two other convalescent hospitals, and one home health because he is so hard to take care of. In the meantime I am trying to find a permanent home for him in an assisted care facility....do you know they are all full. With all this my poor husband (72) is so bad yet cries from depression, and loves me so very much and I can't help him and that hurts so much it is making me lose control, drinking every night and started smoking again after like 12 or 15 years. I really have no support except you guys and by best friend, and a friend who's husband also so has dementia (but not at bad as my John). Today was good but that is the exception.
(1)
Report

BLAM !! ( brain exploded ) ..
(0)
Report

Photo any update on how you are doing today? Worried about you
(0)
Report

eh , im fine dusty . just need a higher quality of " friends " . it isnt all in my head , some of these clowns are laughable . my friend ( flatline ) only buys the highest dollar food from kroger , leaves leftovers on the stove every night and crams them in the dog bowl the next evening-- because " joey wont eat leftovers " . i call BS . you dont feed that cokesacker for about ten days and hed eat lawn clippings .
i wouldnt care but i get sick of hearing about bounced checks . meanwhile im thrilled to be able to afford chicken livaars . her response ' " i dont eat liver " .
hopeless , im sayin . i like to fix things , " hopeless " makes my gray matter sizzle .
(2)
Report

ive changed my mind .
no , it gets worse . as caregiving causes us to mature the people around us chip away at us with their oblivion . ya wanna cram one inside another , inside another and throw em in the oven like a dam turducken ..
( teeth grinding )
(0)
Report

Photoartc, is there someone in real life you can talk to? People here support you, and are sorry you're going through a hard time, but it's not like we can meet for coffee.
(1)
Report

Yes and no. Your husband has a progressive disease that may continue getting worse until he dies. Your grief over his increasing impairments may get worse. The physical effort of caring for him may become even harder. None of this is certain -- but it is likely.

So it may get even darker.

But you've gotten through it this far, and you've gained strength along the way (even if you don't feel particularly strong at the moment). You will get through the darkness. Seek out all the help you can. Lean on every support you have. Trust in your own compassion and strength.

My husband died of Lewy Body Dementia about a year and a half ago. Oddly enough, as the disease itself got darker in the physical realm it lightened up in the cognitive area. He became more coherent and his personality shown through more. We became closer in those last few weeks. He died holding my hand. I've gotten through the dawn. There are bright sunny days and overcast days and a few days now and then with very little light.

You ask if things will get better. I think the answer is YES ... but maybe not immediately, and maybe not all at once.

Being a caregiver to a loved one (especially a life partner) is a very hard journey. I think getting discouraged at times is inevitable. Not seeing how we can continue is bound to happen sometimes. But you will make it through, and you will have other journeys that will be much happier.

Continue posting here. We hear ya! But also reach out for all the local help you can find. We often realize we must get help for our loved one, but it is important to recognize we need help too.

Please keep in touch and let us know how this is going for you.
(3)
Report

my heart goes out to you Photo, and I know it must be a really bad time going on in your home, but, you've made it through this far, you have to hang in there, please, for yourself and all of us that care about you and your situation.
(1)
Report

I know things may seem very bad right now. I think all human beings have strength that we can call on in time of crisis. I think taking a deep breath and logically thinking about the situation will help. I read a blog called Happiness in this world and according to Budahism a prayer is a vow to seek wisdom. I think wisdom is the ultimate answer to all. I am a Christian but I believe that all knowledge is of benefit. Please hang in there!
(0)
Report

looking back a few years id say that the decline and demise of our elders is probably what conditions us and strenghtens us to BECOME the new community elders .
i can only say that life is getting better for me almost 1 year after my moms passing . i just feel more capable and calm inside . all my energies are focused on getting my own life back on track .im helping out an 80 yr old demented aunt now and it comes easy . a casual laughter where there was once mourning and depression .
(5)
Report

This discussion has been closed for comment. Start a New Discussion.