This past Saturday, DH was quite agitated, pacing, trying to get out of the house. Our live-in aide thought it would be a good idea to take him outside on the deck to enjoy the good weather and thought it might calm him down. Well about 1/2 hour later I hear the aide yelling at DH to stop (couldn't see what was going on from where I was in the house). All of a sudden the aide comes running into the house, opens the garage door and runs out. Next thing I know the aide is telling me DH jumped from the railing on the deck and can't walk but can crawl. Sure enough, DH comes crawling into the family room complaining of knee pain and elbow pain and cannot stand up.

I take him to ER and after hours in the ER he's dx'd with a fractured knee cap (in 3 places) and a broken elbow and admitted with surgery scheduled for the next day. Never got a plausible answer from the aide, but DH did say "he jumped the fence and got caught on it". Underwent surgery (general anesthetic) to repair knee on Monday and is now recovering in hospital. so far there appears to be little if any effect on his dementia from the anesthesia (thank god) but his leg is immobilized and he will need acute or subacute pt for 2-4 weeks to learn how to walk again and return to his baseline (hopefully).

DH has never had surgery of any kind, so to see him in the hospital is quite upsetting, but I do have to say his behavior has been surprisingly good. Just another chapter in our chaotic dementia lives.

Please send hugs so that he recovers to his baseline before the breaks.

LFL
{{{{{Hugs}}}}} {{{{{Hugs}}}}} {{{{{{{Hugs}}}}}} and more {{{{{Hugs}}}}}
I'll be praying for you and for your DH, that he recovers well from his surgery, and returns to baseline, and that you get through this latest crisis relatively unscathed!

Leaping Lizards Batman!! Thank God he is going to be okay, and so glad to hear there hasn't been any ill effects from the anesthesia. Wonderful too that he isn't being upset by the whole ordeal. Poor bugger! How are you holding up ((LFL)) I hope you are able to get some rest in the midst of the chaos. I will keep you both in my thoughts and prayers ♥
And lots and lots of ((((((((((((((((((((((HUGS)))))))))))))))))))))))

To all my wonderful friends here-THANK ALL OF YOU for your wonderful cyber hugs and encouraging words. He is still doing relatively well cognitively but today he was having a bit more difficulty with his speech. Believe it or not, even after PT he doesn't complain about elbow/knee pain! He's had NO pain meds, not even an ibuprofen since the night he was admitted. Perhaps the part of the brain which recognizes pain is shot?

PT is another story...because his right leg is in the immobilizer and his right elbow is broken, he is afraid to stand up because he cannot push himself up on the left side (non-dominate) so he is very wobbly and unsure. H needs 3 people holding him but once he gets moving with the walker he gains a small bit of confidence. Spoke with the sub-acute rehab center today and the head physical therapist said it will likely be a long haul if the dr says he has to be in the immobilizer 3-4 weeks because they can't really do any meaningful therapy while he's in the mobilizer. It's a catch 22-if I could get him home I would be not possible right now and a long stay in rehab will NOT be beneficial to his cognitive abilities.

PERFECT saying Nikki-exactly- Leaping Lizards!!! As you know too well, this is taking a huge toll on me emotionally and physically. Like you, I am not one to leave him in a facility without visiting for hours and trying to oversee his care. I think it is so important they have a loving advocate.

Oh divvi, you know what it's like to live with a "runner". And it's a fine line between managing them so they can still function and subduing them. It's been 5 years, many doctors later and we have yet to find the appropriate meds to control that. I'm still hopeful but a bit afraid the doctor will say I can't keep him safe and force me to put him permanently into a facility. When she hinted at that BEFORE the fence jumping incident I told her even a facility isn't a sure thing because he'd already escaped from one 5 years ago.

I am glad to hear he isn't suffering with pain, I know this is a comfort to you. Being there with them does take a toll on us too doesn't it? I am not sure what it is about a hospital atmosphere, but it seems to suck the life right out of me. Last time Lynn had to stay in the hospital they actually brought in an extra bed for me. I thought that was so sweet! I needed to be closer, to just touch his hand, so they then brought in a chair that reclined into a bed. I couldn't believe how concerned they were about my comfort level. I hope the staff there are being kind like that to you too ♥

I am remembering when my Gram had heart surgery, she was too weak to go to PT so they arranged to have them come to her house. Would that be a possibility?

You both remain in my thoughts and prayers ((LFL))

When hospitalized last year my husband was asked who he was- he could not give the correct response. He was then asked what year it was and let's just say he was decades off. Finally he was asked what he was doing and his response was "I am flying down the highway".

He was chemically restrained at the time. All I could think was that I hoped he was having a pleasant flight and that some part of his brain that was keeping him somewhat in touch with his reality at home was relinquishing to another place, a place that had him flying.

So many hugs!

Aww, Mothert I am so sorry. You are a good person also. We all have our moments ---as our job is so demanding and not very appreciated. Hang in there girl tomorrow is a new day ((hugs))

My 5 year old nephew tied a bath towel around his neck for a cape and climbed into the apple tree. He was going to be Superman before my mother caught him :-)

Update. DH was transferred to a rehab facility last night at 7:30. Long story short, they did not put him in the unit we agreed upon but the dementia unit. What's the problem, you say, he has advanced stage dementia? Although I am sure the medical/nursing care he will get on that unit will be better, based on past experience when he in in the environment with people who have dementia behaviors, he mimicks them and can become difficult to deal with. My real fear is that he will decline cognitively, have behavior issues documented in his file and I will be told "he can't return home for his safety". They also started discussing his "extended stay" beyond the 20 days medicare approves. I told them the conversations I have had with the orthopedic surgeon are that he's to be released once he can climb 3 stairs and walk 20ft with a walker.

I summoned my "inner Nikki" and met with the NH management team - Director, DON, Social worker, head nurse on dementia floor and told them my expectations regarding his care and the goals for his pt and I would accept no less than what I was presenting to them.

For now he's in the dementia unit (which he hates) and I will play it by ear. A dear friend I suggested that I view this as respite and embrace it. Then I can deal with the other issues when they arise. she is very wise and I know she's right, but I have worked so hard for 5 years trying to keep him calm (sometimes more successful than others) and keep him at home.

From one "Momma Bear" to another I say job well done! Good for you, give em hell! I agree that now would be a good time for you to try to catch up on your rest, but I also understand the need to be there with him. At your meeting, did they tell you why they put him in the dementia unit, and did they give you specifics on if/when he would be transferred to the PT unit?

I would worry about a decline too, no matter which unit he is in. But if he is higher functioning I too would worry that it may cause a steep decline in cognition and function.

I will add my prayers that he regains his strength quickly. ((Hugs))

LFL ((((((((((((((((more love and support)))))))))))))))))))

That actually makes perfect sense (notice my shock lol) I was thinking the same thing, he can't run... but yes how horrible it would be if once he was able to take a few steps he tried to try to climb another fence. Yikes! I am glad to hear you are taking a much needed break, it is very overwhelming at times. I hope you get some much needed rest (((hugs)))

Update on the continuing saga....went to orthopedic apt yesterday to see how dh's knee cap was healing and get a better handle on when he could leave rehab. Well, apparently someone at the rehab facility allowed him to bend his knee, thus ruining the knee cap repair! Dr told us that the 2 pieces of the knee cap are no longer joined by the screws and probably dh will have to be in an immobilizer (those black contraptions that go up the whole leg) for the rest of his life in order to walk. Somehow the place I had to put him in "to be safe" didn't keep him safe and he may never walk again.

Oh did I mention that he had a seizure in the rehab his first full day there? I'm positive it was the antibiotic they gave him the night before, but even with my research that says Rociphen can cause seizures, the nursing/doctor staff doesn't believe me. What do I know...I've only been doing this for 5+ years.

So now I have no idea when he'll be able to leave the rehab facility or in fact if he will ever come home now. Because his leg must be in the extended position at all times, there's not enough room on the staircase with a stair chair so that he can ride the chair up/down the staircase with an extended leg. No bedroom/full bath on the first floor.

I am overwhelmed by all this and quite frankly I'm not sure how much more I can take. This too will pass, I'll pull up my big girl panties and find a way to deal with it, but right now I need to crawl in a hole.

It sometimes seems like it will never end....question and I have no medical knowledge about this but if they can replace your hip and knee joint couldn't they replace the knee cap?

The seizure may have happened because this disease is now attacking another area of the brain.....just a thought.

Hey hang in there. It's all we can do.

Thank you dear friends for your prayers, offerings of hope, the rope and of course other options. I truly love you all and I am grateful to have you for support and inspiration. I would never had made it this far on our journey without each and every one of you.

Amber yes they can replace the knee cap with a metal prosthetic but according to the doc they frequently have to remove it after a few years because it causes pain. Now that I've had a bit of time to process the info (and get over my sadness and disappointment) I'm back to my fighting spirit and looking into different docs, different options, etc. I'm summoning my inner Nikki mama bear again and I'm ready to attack and find a solution to this problem. Wish me luck, send prayers and most of all your wonderful, loving support!

LFL, You are a woman of inspiration ---gosh I respect your stamina. You will survive with that "fighting spirit" . I do wish you luck, prayers, and of course support. I know that you will have a solution (possibility a more highly skilled ortho guy). Keep on fighting girl. You have your big girl panties on now and get "battle ready"! Give them hell LFL!!!!!!

LFL so very sorry to hear of this latest development and setback.. if indeed this removal of the brace which allowed the kneecap to break apart was caused by error by an employee then you may need to consult an atty if the damage is permanent. I am never for lawsuits if it can be avoided but if the fault lies with the care facility then they may can be held accountable and responsible for his lifelong care in the longrun if hes truly unable to recoup and come home. very sad. I also agree you should get another opinion and the what ifs to repair the damages if possible at a future date. its always worrisome to hav to allow our spouses into the care of others due to these very concerns. I hope you ask a lot of questions and get reasonable and assuring answers.
my best
divvi

its true LFL that attys base a case on how much a life is worth. unbelievable isn't it! but yes one of our dear spouses who is compromised without a lot of 'quality' life left would be a lesser subject for a lawsuit. unless you are in prime health and young enough to warrant a lot of money to see you thru your otherwise compromised lifetime many attys wont take a case like that. so sad but its true.
so sorry you are faced with more hard decisionmaking. and having him wheelchair bound for a dementia patient well we know how difficult that can be as well.
I hope you find the right combo of drs and suggestions to get thru this and DH makes a rebound.
divvi

LFL,

My heart is breaking for you. You have sacrificed so much emotionally, financially, and physically to care for your husband and now this. Oh, I am so very very sorry!

I wish you much Godly wisdom. I know so much of your savings will be depleted if you are no longer able to care for you spouse at home. Perhaps this now the time to revisit an elder law attorney to weigh your options. Many years ago when I was a young woman with children my previous husband suffered an auto accident with a closed head injury and in a coma (not induced for almost 9 months!) I was forced to divorce the man I loved because of the medical expenses of an nursing home. The automobile accident was his fault (so there was no lawsuit or settlement) If was a huge emotional decision which I was faced to do, but I was forced to divorce him. I was granted court guardianship so I was able to oversee his medical care. I am not suggesting that you do this however, you must protect yourself financially ! I hope you don't take this the wrong way, because it is given only out of concern and love.

Also, I don't know how your state operates, but you may wish to look into talking with an "osbudman" about what occurred. We walk a tightrope with these placement centers because we want the best care possible for the patients however, we don't want to rattle cages either because our loved ones could be subjected to retaliation.


Many cyber((hugs)) lullie

Divvi, you are right, it is based on lifespan and quality of life, so I actually don't think it's worth pursuing. Pi**es me off however because I do believe there's been neglect.

Dorie, I am seeking another opinion from an orthopedic trauma surgeon to see if there's a different approach that might work. The good news today is that he can walk with his right leg stiff and was even able to climb 4 stairs today. Progress for sure, but still not ideal. At least he may be able to use a walker with the new brace on his leg. I remain hopeful (or delusionary, not sure which!).

Awww lullie, we've come a long way, haven't we? I can only imagine how difficult it was for you and you were sooo young. Yes, divorce is still an option with guardianship, but I would prefer not going that route, but we have to do what we have to do! Yes, I will be exploring the ombudsman option, but as you say it is a delicate balance since if he has surgery and needs rehab again, most likely due to his dementia and past behaviors, he will most likely have to return to the same place.

Coco, sweetie, thanks so much for your prayers. They mean a lot since I know how difficult your journey with Dado has been and the battles you still are fighting. Prayers to you too.

LFL, talk about being wedged between a rock and hard place! I hope the surgeons will be able to come up with a better option. I know you are furious at the rehab center for not only not keeping your husband safe but for actually causing him harm. There doesn't have to be a lawsuit (which btw really pissed me off to hear they would lessen the value because of his condition.. to my thinking it should be increased because he is compromised and needed their care more! Grrrrrrrrr!)

I am guessing what you want though is not money but justice. You want them to own their mistake and to ensure it wont happen again. The Ombudsman would be a good place to start and they can also put you in touch with other agencies who could help you pursue this. The thing is, it takes a lot of energy, something we are often in short supply of when also caring for our loved ones.

But I do believe contacting the Ombudsman might bring you peace of mind. If you had concerns about sending him back if he does have another surgery, having someone from the Ombudsman's office there advocating for him will put extra pressure on the facility and staff to ensure better care and safety for your husband.

Again so sorry this has happened :(
Love and hugs to you ♥

Shellseeker50,

Yes, accidents do can and do come with the territory of aging and dementia however, please don't confuse an accident from negligence. Hospital, nursing care facilities are not full-proof environments true however, these facilities should be held to the highest safety standards. After all, the staff should be highly trained to prevent falls, accidents, and the unexpected. These costly environments should be monitored and evaluated regularly to meet the highest standard of protection emotionally and physically for their residents.

I strongly believe that each and every accident should be documented and investigated as to "how" and "why" an accident or incident occurred so that does not occur again and that preventive measures can be made for future safety of our loved ones.

LFL, he has not be ambulatory for the last 3 years. He has had numerous knee replacements and due to his mental state forgets that he cannot get up and walk. He falls and then we have another surgery b/c the first surgery was due to an accident soooo in order for the insurance (liability) to make thing whole they continue to try to make the knee like new?? it is exhaustive. He was in ICU b/c during the surgery they could not control the bleeding and after 8 units decided to stop and placed him in the ICU to stabilize him medically. Of course when he awoke and was in traction and connected to all sorts of machines and tubes he tried to escape. He had sponges in the cavity for 3 months until they tried to replace the knee again. I am all for just fusing the bones and leaving the joint out. He cannot use it anyway.He is completely incontinent and having that long stabilizer makes clean up a real chore!!!!!!!! You are so right they never think through the complications that arise from the dementia. They are trained to try to do most they can for the physical needs. I hope all of this is resolved for you. I was just saying look out b/c once they start with the falls and accidents, they tend to snowball!!!!!!!!!!

Thanks lullie...it means a lot. Oh Shellseeker50-what a NIGHTMARE!!!! I have decided we will try one more repair and if that doesn't work, we're done. BUT, I need to get all treating physicians on board including the idiot Hospitalists they now have in the hospitals. They don't know the patient and their job is to get them discharged as soon as possible no matter what.

Never ends, does it?

I do blame the insurance companies and medicare, that's why they have hospitalists now and you can no longer see your own physician while in the hospital.

LFL,

Oh girl, my heart is breaking for you as I read this recent post. I can't imagine going though all you have in only 3 long nightmare weeks. You have had such a plateful dealing with all the recent changes and now the "unexpected" expected of his return home.

Yes, I fully understand being pi**ed off. I know you'll hear "it's the disease"...I am so sick and tired of hearing that sentence I could puke. Does that make it any easier? Hell, no. And we don't need any lectures from dim-witted "well meaning twits of so-called well meaning folks that are clueless. Be angry---- you have earned that right. The staff was negligent, the insurance companies made no exceptions to their bean counting rules, and your family has kicked you curb-side. Yes, your anger is well deserved!

I really "get it" that you need your husband to stabilize and settle back into your home environment. LFL, I believe that he will. He's been though so many changes his brain can't process it all at once, but once he's back on his routine the familiar will kick in. I pray that each day will improve and get easier for both you and him. Yes, I truly hate this disease as well.

Please keep us regularly up dated on how you are doing. We love and care for you dear one. Many hugs and thoughts...prayers for peace!