Coco - So sorry for what you're going through. What a hard road we have to travel, eh? But, with help and support from this website and the many friends who help us here, we somehow muddle through.
I remember talking with you when your sister died. At that time, my sister, my only sibling, was going through a terrible time and now she is dying. The horror of dealing with my husband and now my sister is unbelievable. My doctor wants me to go to a support group. I told him about this one. I don't know how I could possibly manage things without it. All I know about dealing with a person with dementia is coming from this place, and I'm so grateful. How I'm dealing with my sister's problem is another story. She is my best friend and I don't know what I'm going to do without her. I finally have to admit (after all my denials to the contrary) that I might be suffering from depression. I really didn't think that was happening. I've been thinking all this time that I'm dealing with everything just fine. But my doctors are seeing something else. They think I have caregiver burnout and maybe I do. I'm helping to coordinate things for my sister and her sons (unmarried) and she's so afraid to ask for help from me because of my husband. But, I need to help with her, not just because I want to help, but because I NEED to! I need to know I'm doing everything I can for her before the end. I Need to be with her. But, there is also a need to be with my husband.
Now, Joan, I know how difficult it is for you. Having to balance everything, giving something to everyone, and not knowing how to do it, feeling the shakiness in the legs and feeling like I'm walking in water.
I guess I'm really feeling sorry for myself tonight.
Bev I have put my email up in my profile, please, if I can do anything even say the right words, contact me. I have other siblings so I have to say, if I did not have more sisters I would have been way over the top devastated, as she was the best.
I hope that you can spend some time with her now. At the hope of not using a platitude, I say to you, we can smile again after the grief, we need to allow it. I am at a place where faith is real shaky and I cannot see the big picture, yet little whispers from the spirit come through for comfort.
Coco: I'm so sorry for your struggles. This seems the longest thread I've seen it is a testament about who you are to everyone here. Please don't question yourself, your clearly doing everything you can. I see great advice here from your friends. Though I'm a pretty strong person, I'm easily devasted if I allow myself to really see my DW. It's so sad. So, I've chosen to block all that sad stuff out. I replace the thoughts at all hours of the day with my own thoughts of a person hobby or interest or about making plans someday when this ends. I simply cannot allow myself to linger on the pain of all this. I've chosen to follow the advice of the therapyst and that is just view this a job that we've been charged with and I'll do it to the best of my ability. Once in that frame of mind I see my lovely wife as just a person whom I am helping, not the lovely wife of 31 years. It works for me most of the time. Perhaps this is not helpful but I just wanted to offer something to you. It's a life-changing experience we are traveling through just try not to think about it just now. You will get through this. Be well.
Please read what I wrote under JanK's thread..... and ask yourself this question... Would your Dado want you to place so much stress upon yourself? Would he want you to be this close to breaking? I know how very much you love him, but please try to remember, he also loved you very much, and would not want you to self sacrifice this way.
The falling is not normal, and should be treated as an emergency. I would let the VA know I would not simply let him fall, that I would be calling each and every time to get the ok to get him to the hospital. There is a reason for the falls and they need to be trying to figure it out.
I personally had horrible experiences with the VA, so much so that I had to drop out of the VA medical system. I found their care severely lacking and I think the doctors have the bedside manner of lima beans! Does your Dado qualify for medicare? If so I think you would do better to drop the VA and find him a different medical team.
Coco, my heart goes out to you and your husband. I don't even know what to say other than I am praying for you to find peace. You are doing all you can, just keep it up. Don't let anyone get over on you. If you need strength, you know to come to this site and it is here along with hugs and prayers. You are never whining so please don't loose sleep thinking that. We all love each other here and need each other at different times. My prayers for you and your dear husband are for comfort and peace....
Coco, My heart just breaks knowing how hard it has been for you. Please know that you and your dear Dado are in my prayers. You are doing an awesome job in your care for him.
Nikki, glad to hear from you. I think of you and Lynn often and hope you are able to find some peace.
thanks mammie and blue. I was kind of finished posting here until I saw Nikki was back!
So I will let you know, that his falling is less now, lowered his Seroquel, giving him pain management for his sore knees. He is still having a fall here and there but not like last week!
However that hell has me resolved to be ready, I am working on paperwork slowly, in case this gets worse. That was all too much. Love you guys.
I love you too Coco <3 I had no intention of being awol for that long, time just got away from me. My cable is down (again) so only have my little phone, but will check in later.
I often need little breaks, but you and all our family here are always in my heart. If you ever need to vent you can always email me or catch me on facebook.
Love to you dear Coco. You are amazing! Never forget that ((hugs))
Coco, ... I had to call 911 many, many times when my DH fell. I'd tell the 911 Operator that my husband had fallen, he was not bleeding or hurt, but I couldn't get him up from the floor. The EMS guys would come to the house, lights flashing but without a siren, and were so good about lifting him up and carrying him to his bed or chair. They'd check his vitals to be sure he was OK, and they were so understanding. They never charged me a dime. I'm trying to recall, ... and I do believe I had to have called them at least ten times in two months.
Nancy B* thanks so much for telling me that! I am so sorry you lost your husband.
Can you tell my why you think he fell, and what the progression was after that? Dado is falling less this past few days, I am seeing now too that his arthritis is really bad, his knees are really crooked.We cut back his Seroquel a bit, he is still falling here and there, but not as hard.
Coco, Lynn had a period of time when he was falling all the time as well. He wasn't on hardly any medication at the time so it wasn't medicine related. I don't think doctors really investigate too much when there is dementia, they just chalk it up to part of the disease. I think that is so tragic really, because what if it is a medical condition that could be helped. Say an ear infection for example.
We never did find out the reasons for his falls. Sadly he stopped walking soon after that. He still at that time had the physical ability but he had a look of stark terror whenever I tried to get him to stand and walk. I think he was forgetting how to, . I stopped pushing him when he would cross his legs and slump to the floor. Broke my heart, …. But so did seeing him in that amount of fear. We do what we think is best for them and pray it is the right choice.
There is nothing pretty about this damn disease. I hope the medicine helps with his arthritis. Who knows, perhaps pain was making walking too difficult? So so many questions and never any answers….
I have been away for awhile due to my own medical concerns but that does not mean I am not thinking of you and praying for you and Dado.
I, too, also had to call emt for falls. As long as they came and placed him in his bed there was no charge. There would be comments though, such as "he should be in hospital" but until H's final day here they did not insist.
When they did transport, there was a charge billed to insurance that covered either none of it or a portion of it. This, though, was based on the claims and where the transport company was in the line up. They covered some of it and the transport later seems to have accepted insurance coverage as payment in full.
Once H's state and the obvious dementia was observed, there was not much further investigation. They had a concern about whether or not I had been abused, which you and I have shared here.
Bev- I am sorry, and am sending you best wishes.
My PCP last week said he thinks I am suffering from PTSD.
Coco, Our PCP told me he had observed that AD affected balance after a while. These frequent falls were in the last half of his last year, but he did fall about once a month for several years. Early on, he could get up by himself. Toward the end, he never could. He had a walker, but would often walk short distances without it. He fell frequently in the bathroom . Our toilet was in a small separate room from the large bathroom and the walker didn't fit in there. I think he fell in there 4-5 times. Imagine, he would leave his walker outside the door, go into the toilet area and have to turn around. Even with grab bars, he'd have trouble getting up on his own. I wouldn't always be there to help him. We lived in a two story home and (earlier in the disease) he would go up the stairs to take a nap in an upstairs guest bedroom. He would say it was quieter there. He could go up the stairs easily. However, shortly after he began doing that, I'd observe he couldn't come down the stairs. He'd hang on to the rail and hold a foot out over the step but would be unable to take the first step down becasuse he didn't have depth perception. I'd beg him NOT to go upstairs, and he'd promise he wouldn't....until the next day!!!! Finally, I had to put many many strips of blue painter tape up and down and "x'd" across the bottom of the stairs from the ballisters to the wall to stop him from going upstairs. (I had tried a baby-gate, and he could open that!) The blue painter tape didn't look very good .... but it accomplished my purpose!!! Without a doubt, their medication certainly could have affected their balance, too. I know each and every one of us widows experienced our LO's falling, more and more as time went by.
One night before I began calling 911, I gave up trying to get him up, ... brought two pillows and a blanket into the bathroom, and we slept together on the rug on the floor. The next morning, he was able to get up by himself with my help. Sometime, it just takes a little time.
Nikki, Abby, Nancy B* I so appreciate what you have shared. Dado has fallen less these past few days, and not as hard, but he is still falling. In fact, the Home Aide that comes for a 10 hour day a week, was upset when I got home as he had fallen on her time here. I had to reassure her it was not her fault, though she admitted to now taking it more seriously.
This morning really early, ugh, 4 am. , I heard him get up from his bed and WALK REALLY FAST to the door to outside, kind of like he was trying to escape. As our house is really small he cannot get away with it. How strange, that for days and days he can barely walk and falls face first, then can get up and go to the door that fast.
If you don't mind answering me this, did your guys seem even somewhat clear minded as they went through the falling phase? I mean, one minute he cannot talk at all and just says the word "basket" for everything, and the next minute he seems almost clear. He even remembered the name of our neighbor and told him hi. usually he does not.
Yes I know it seems like I am looking for a timeline..sorry. Honestly sometimes I feel like I will go first. Oh my dear caregiver brethren here, oh how I feel for you all.
Coco what a difficult time you are having. As the saying goes.."This too shall pass"..but, until it does you are on pins and needles. It is a real shock to see them doing something that you thought they could never do. I remember when Jim could hardly get out of bed and talking was a very rare thing and one night I woke up and he was sitting on the edge of the bed fully clothed. Never could figure out how he did that when I had to dress him all the time. But, the one saving grace was he had a smile on his face like "look what I just did". Needless to say, I wasn't smiling. You have been having a really ruff time and you are in my thoughts and prayers. Take care dear friend.
Abby, I think we're all suffering from PTSD...who wouldn't after all the stress associated with the many years of caregiving? We are constantly being challanged and on pins and needles-will s/he fall, is s/he going to have an accident in public, when will the anger/aggression resurface, how many times can I get him/her in/out of bed? It's endless and even though we do it out of love it is nevertheless stressful.
I posted the how are you above without paying attention to how recently you posted.
To answer your question, one of the most hearbreaking moments, and they came to be more and more frequent: first, most likely from his bathroom: "I fell." This was said with a look of amazement. That handsome face, those eyes that used to sparkle and shine with enthusiasm and conviction, "I fell". Oh, ****, to see that daze; in the absence of violence, and threats. The confusion. He knew and he didn't know.
I'm sure that is not even an answer dear Coco. It is just what it was.
LFL- When PCP told me that last week I had a feeling of "he really sees me". There was no dismissal, no minimizing, just this feeling of acceptance.
Need to sign off tonight. It was four months today.
Coco, I wish I had a magic wand I could lend you ((hugs)) When Lynn was in the middle stages he often went "in and out". Some days there didn't seem like much was wrong at all, yet the next day he couldn't remember his own name. This disease has no rhyme or reason, you will never be able to get one step ahead of it. One day at time, one moment at a time is all I could handle.
To answer your question though, no Lynn did not seem clearer on his first bought of falls. But the second period of time was soon after he was put on the Marinol, and he did seems a lot clearer. After journaling the falls I was able to pinpoint why he was falling. It was always after they gave him a suppository! He had forgotten he could no longer walk, but somehow once again knew he had to go to the bathroom. It was only after a suppository and the urge was ahhhh greater. That too has passed, but I no longer let them give him suppositories unless I am right there with him either.
((Abby)) I believe when our journeys are over, many caregivers will go through a form of PTSD. When my Dad took his life, several of my family members showed classic signs. I am glad you are seeing your doctor and am grateful "he really sees you". ♥