I found it got to be a pleasant surprise when someone did his/her job properly. You think, WOW! Anyway, your wife has you to run interference, so she is blessed to have you. And be on the lookout - there will be someone along who cares and will help you both. In my case, it was a doctor from another country who was working as a care aide here in Canada, and she not only gave my husband superb care, she took care of me, too. She went to bat for us with the care facility staff, including the doctors, and I stood back in awe.
Doctor had me send DH to ER late yesterday, then ordered Hospice to evaluate him. He didn't qualify but they did admit him to the in-hospital hospice unit for 3 days of respite for me! Since he is not admitted to hospice, no meds will be changed. Meeting with social worker this morning,who will actively look for an open bed in a nursing home, and if found within these three days, he will be directly transported there. They were so loving and tender with him last night, I know he is in good hands. At this hospice at least, dementia and being non-ambulatory does not qualify for hospice - he has no other medical condition to qualify. At least they offered me a little respite.
Vickie, so glad you got a couple days respite!! that's great news. and now hopefully they will have the bed available to get him into the nursing home within the limit time. take this time to recoup best you can. you have had your hands full lately. divvi
Met with Hospice Social Worker this afternoon; one hour later she called me and asked if I could meet her at a NH at 8:15 in the morning, to sign papers. She found a bed for him in record time. This home is only less than 10 min. from my house! When I saw him this morning in the hospice unit at the hospital, he was sleeping. This afternoon, he slept off and on, but did not know me nor where he was. Breathing is not good either. Such a sad, emotional time, but it has to be done - I can't do it any longer.
My thoughts and prayers are with you and your husband. Yes, I remember placement as being a very emotional time. You have been courageous, loving and patient. I hope you can get some rest and comfort in knowing that this was not just the best choice at this time, that it was the only choice.
Vickie, although this terribly sad, it is just the next transition in caring for our loved ones with this dreadful disease. You will be able to be his loving wife again as you let the experts take over his daily cares. Please be kind to yourself in the coming days and weeks.
Vickie, I'll be thinking of you both. You've had a very difficult time lately, bad as you said, it had to be done. You'll be in my thoughts today. (((HUGS)))
I placed dh in an alf at the end of October. Hardest thing I have ever done. I am still reeling from the effects. It is as if my life has stopped and I am in another time zone. I was visiting dh every day but found it was actually debillitating and I have cut back to 4 or 5 times a week. dh doesn't look for me or wonder why I am not there. I think he has made a better adjustment than I. His heart is not functioning well, suffers from congestive heart failure. Heart meds are helping the right side of heart but his left leg is swollen and just won't go down. If we increase the meds, then his bp will go very low and the risk is great for falling or passing out. He is still walking around which is good but can't remember to raise his leg when sitting.
I couldn't keep him home any longer, no help. I felt so helpless. I still feel that way. What a horrible disease!
As many have said, the breaking point is different for everyone, depending on the situation and particularly on how much help they have, and the breaking point has to be flexible. My husband was never violent---that would have been a definite point---but I thought I could not deal with incontinence, but because I had lots of paid help, we could. Then when he could barely walk, because we had a downstairs shower, we moved him downstairs for a year. But the day he could not stand/walk without assistance and every "transfer" became a two person job was my breaking point. I had already chosen a place, and they had a private room/private bath available the next day, so I took it. The transition has been amazingly easy, but I think it is because he is so far gone anyway---doesn't speak, needs to be fed, and now wheelchair-bound. The other interesting thing is his appetite has stayed the same---in fact, we think he might be gaining weight in the nursing home, which I know is unusual.
hikergirl, I just took it as it came. I never thought about whether I could do it or not...I just did it. Sure, I had to wipe his butt and a whole lot more. Better for me to do it than some stranger. Were there times I thought he would outlive me? Yes. I prayed to live one day longer than him so I could care for him. I made it and I would not have given up one minute with him. Sappy, but true. All the poop and the pee and the bathing, shaving, dressing, feeding, putting his pills in his mouth and holding his cup were worth that one kiss, that one hug, and that "I love you" that I could barely understand anymore. God gave me the strength to get through it and the back problems are gone.
I think I am reaching my breaking point. Ironically I made it through the aggression and physical violence, the endless pacing and attempts to wander, the endless nights for 3 years of sleeplessness, the sundowning, even the bowel incontinence and approaching urinary incontinence. What's difficult for me to handle is his total resistance to wearing pull-ups. I've tried every brand and even the washable wearever underpants (which by the way are only for minor incontinence, they don't hold much urine as demonstrated today) and he refuses to wear them. Today he started tearing them off piece by piece when I was trying to do something online and his ft aide was busy in the kitchen. Before we knew it he had torn the whole thing apart (quietly) so all the padding and the absorbent chemicals were strew all over the family room rug. The only way I discovered it had happened was that our little boston terrier was eating the padding and chemicals. Thankfully he vomited soon after eating it but a call to animal poison control ($65) was necessary to find out if anything was poisonous in the pull-up.
Aide gets DH changed, cleans up family room rug and kitchen (what was left in DH's pants was spilled onto kitchen floor) dog is safely in his run so as not to eat anymore stuff. Within 1/2 hour, DH gets up quietly, goes into kitchen (or so I thought). I follow him and he is in dining room peeing all over the floor and his pants (wearever can't absorb the amount of urine. This is new behavior...we always take him to the bathroom every 45 mins or so and have had no problems. Until today, he has always know where the bathroom was). I am one of the lucky ones, we can afford ft in home help because of DH's LTC policy but that will run out w/I the next year. But if he insists on tearing the pull-up apart so his urine is not contained, or he can no longer understand where the bathroom is, I am really not sure how much longer I can and want to care for him at home. Not to mention causing a hazard to the dog.
My house stinks of urine no matter how much I clean, the couches and rugs are being ruined one by one because he just pees wherever, my wood floors will need replacing and he's noncompliant with using the pull-ups to help with the situation. I think I've had it.
LFL the only option is one of those one piece suits that closes in the back. he will NOT be able to get out to pee or poop or anything else. you change him on your schedule or when your nose tells you:) I would not hesitate esp since you have an aide to change him. they are nice looking and 40dol at buck and buck. or try the buckling pants in the back. if they cant get to it they cant make a mess. your poop queen has run the gambit.:)) divvi
I am so sorry you are having such a rough day and so many, far too many, challenges.
You know all about my husband's aggressive and threatening behavior and how my fears for myself and the cats was my breaking point. And, his bowel incontinence was actually worse than was the urinary. So, I have no suggestions.
I wish I had a magic wand though. I admire you for so many things, not only how you have managed your husband's care, but also how you are so supportive of all of us here. You've shared your professional knowledge, your care expertise; you have such a kind heart and generous spirit. You have always taken the time to give me comfort and wonderful advice and I appreciate that, and you, so much.
A friend of mine had a problem with her husband at the ALF taking off his clothing and defecating everywhere. She ended up getting both a one piece suit that zippers or ties up the back and a wrestling suit on top of that because he was able to remove the one piece suit. That worked, in that he could not remove it.
Update: MD who confused rehab & Hospice objectives has resigned from the Hospice team according to a letter received in response to my letter detailing his actions Sue remains in horrific straits. Cursed with terminal restlessness she now near 6 weeks without sleeping More than 1hr a night in a bed. she's reacted to every sleeping med tried as if it was speed! She wanders,Zobie like, sleepwalking, and will only occasionally snooze for 15-20 min. in a Lazy Boy type chair. Thus far two 5 day inpatient Med regulation stays at hospitals have proved fruitless. The new Hospice team now has her on 24hr crisis care with round the clock nursing. Her meds are all admin IM as she refuses all oral meds. Today's comments... if we every slow her down either chemically or by natural processes I should anticipate her passing shortly thereafter. Her brain, in a sense, knows her body is dying and is fighting tooth and nail to remain alive. We've on the other hand have all been encouraging her to let go, it's ok, she's surrounded by love
I have just now taken the time to read through all of these comments - on my gosh, it just hurts my heart, for all of you & for myself. We're no where near placement, but as I read, there comes a sense of dread. I don't think, at this point at least, that I can face any of this. I know it's step by step, but the whole picture is overwhelming. Maybe I'm reading through these too soon,huh? ;)
Marty, thanks for letting us know how your wife is. It sounds to me as if she is now being handled in the best way possible, all things considered. I have no right to predict but have the feeling that this will soon be over. Forgive me if I've overstepped. I say it more to ask you to pace yourself and get as much rest as you can; eat well, and conserve your energy where you can.
Marty, I am so sorry for what you are going through. You have taken wonderful care of your wife. It must be heartbreaking to not have a clear solution to bring her some peace when she is so vulnerable and in such distress. My thoughts and prayers go out to you, Sue, and your family.
I have already reached my breaking point BUT...the medicare rules have decided that I didn't! I am running into the problem of the medical rules changing every year. For instance, when he was evaluated last I was told he needed to be 130 lbs before I could get any help. Who knows what it is now! I was told that the regulations in NM change every year in June.
I know, deb42657 - just been through all of that. Couldn't qualify for anything until FINALLY a hospice volunteer co-ordinator, neighbor, stepped in when DH was taken to the ER - and doctor ordered an evaluation in the ER for admission to the in-hospital hospice unit. She worked for 4 hours to get it done and while he was not fully admitted, he was admitted for 3 days for respite for me. Then the hospice social worker went to work to find a bed for placement for him. It was done in less than 2 days and only 10 min. from my house. Now he is in a safe place with excellent care with hospice on board there and I can finally breathe and rest some. Finding the right person is the key - hard thing to do. Thinking of you and Marty and others here going through this right now.
Mim, one day at a time...don't think about it...just do it. Just when you think you can't take anymore, you will find that you can. Lloyd started showing signs of AD in 2006 when he was 55. He was officially diagnosed January 2009. He passed away February of this year. I quit work and spent the last 30 months of his life just taking care of him. Our youngest daughter moved back home to support us...literally. Her teen-aged sons were an immense help with their Grandpa. Sixteen years earlier when she was alone with 2 little boys, we had done the same for her. We wanted her to be involved in the boys' formative years. I guess that is called the "circle of life".
Mary75* : You are 100% on target. Hospice MD stopped in to check on wife this afternoon, He said 3-5 days max. Yesterday late afternoon abruptly calmed down, crashed and as anticipated is in a semi comatose mode. Refusing water and food.
Thanks for keeping us informed. Please make room for yourself and get breaks where you can. You'll need that margin of energy to deal with what happens. I am sending you love and best wishes for this tough time.
Vickie--so glad to hear your DH has been placed. I have been here since 2008 and have marveled at your patience and resilience in the face of so much adversity. Now let's hope you can get some much-needed rest.
LFL--Sounds like you should consider placement or at least, as respite stay. Keeping you in my thoughts and hoping a solution appears soon.
Marty--sorry to read of recent events, hang in there.
What devoted, special people we have in this "club". One can only hope that if we, ourselves, need care someday, we will receive the same compassion and love we've given our spouses.
I have to say that even though there is a sense of dread, you all are wonderful examples of what to do, how to do, where to go & when. Marty, I'm not really familiar with your story, but still, my heart goes out to you. I only hope I can be as strong as you (and the rest of you!) as I walk slowly down the same path.
Marty, I have been just been catching up and my thoughts and prayers are with you, Sue, and family. My heart is breaking for you. Take care of yourself.
Vickie, What a terrific caretaker you are! Stu is and has been very blessed to have you. You are in my prayers ((hugs))
LFL, Have you considered respite for a few weeks? I know it's only a temporary solution, but it would give you time to regroup before you make a permanent decision. May you find a speedy resolution! Many prayers are coming your way!
All members---Many thanks for your support, suggestions, and sincere cares. What amazing caretakers each and everyone of you are.
Sue Passed at 5:30 pm. Holding my hand, I only let go when it turned cold. A very lucky man am I, 53 years of marriage to the love of life. No bucket list, no regrets no woulda coulda shoulda's. May she enjoy enteral peace she earned after this prolonged battle with Alzheimer's and Cancer Mr, right now I cannot conceive of life without her.
Marty, you were her anchor, you were the love of her life. May you now find your own peace as she has found hers. My heart breaks for you and I send lots of hugs to you.
Sincere condolences on your loss. May you have peace knowing that you did everything humanly possible for her. May she rest in peace, and I wish that for all those who have been on the same journey.
My breaking point: probably depends on where we are living.
If still in the motorhome there is no way I can deadbolt the door if he starts to wander like his dad and sister did. There is no way I can take him to the toilet or help him shower - there is just not room (maybe if I weighed 100 pounds). And, I do not want to change diapers, clean his butt or help him bathe.
But, we all know when depending on Medicaid who knows what they will consider. So who knows.
My breaking point is now! He lost his keys last Thursday. He does not drive, but has a key to the truck, house, Little building in back yard, and tool cabinet on his ring. We have looked everywhere 100 million times. That of course is an exaggeration, but feels that way. He looks in the most illogical places. He then looks in the same places over and over again. I go behind him because he will forget what he is looking for or see them but not recognize them. Well, of course I am the bad guy. I hid them so that he could not go anywhere. He has not tried to go anywhere in 3 years. If I was afraid of that I would have taken them a long time ago. Then he starts that I don't care and the whole sex and divorce issue comes up again. He is all in my face. I tell him he needs to quit raging and getting in my face or he will be gone. Then the next day he is so sweet and cannot do enough for me. So today the hunt starts again. But last night I had out the peanut butter and crackers and went to fold clothes and he goes to put it up and I ask him to leave it that I was not finished with it. Well, he does not understand anything, so he interprets that as I am telling him what he can and cannot eat. So we go back through the divorce and other crap all over again and in my face and he ends up throwing the butter knife at my feet on the floor. Today I take him to have keys made for all the above. I had backup keys already. I am hoping that this would stop the full out tear up the house search for the other keys. I get a key ring that has a pull cord and fits tight on the belt. The truck key cost $75.00 so we get home and try all of them out. We had to go to 2 stores, one did not have the right keys for the tool cabinet. One of the tool cabinet keys does not work. I need to take it back and have it made again. Well, he thinks none of them work, even though I showed him they did. It has been raining for a week and I did not want to go back out today. I told him I would tomorrow when he was at his moms. So now he is on the search for the lost keys again. It is like a kid, he is going to do that until I get the other one fixed. We are also back to he earned all the money and gave me all this wonderful stuff and we need to sell the house and get this over with. Of course he cannot talk plainly. He has trouble getting his words out. I told him I contacted a real estate agent and they will be here tomorrow. I am tired and I have given up my job for the past 4 years to take care of him. He is in the middle stage six. He was mean when this started 9 years ago and is acting like that again. We have been married 29 years. I have put up with and ex-wife, step kids, mother in law. I have put up with his male arrogance. I have worked the whole time we have been married. I went back to work when both our girls were 6 weeks old. I have worked hard for what we have here too. I know, I am just really tired and pissed off.
I am going to look at a care facility tomorrow. I took LTC out on him years ago. It is time I use it. He is becoming incontinent and he does not clean himself well when he showers, he cannot fix anything to eat, he does not dress for the weather, and puts his clothes on inside out or backwards. He is not capable of taking care of himself. His mom is 85 and cannot take care of him. Happy Holidays to me!
jackiem29, You have every right to be angry. Caregivers are people with real feelings also. When you receive no kind words for all you have sacrificed and the relentless effort to take care of him has to be mentally exhausting. You have done your best for a long time. I wish you good luck in checking out LTC facilities. You deserve some jackiem29 peace in your life. Your frustration and anger are easily understood by me. Take care and be good to yourself.
The details are different for each of us, but when we've reached our breaking point, we've reached it. You are very lucky to have a LTC policy, so you will not have to deal with financial stress in addition to the emotional stress.
It will take some time to find a facility, but knowing the decision has been made, should give you enough energy to cope until he is placed.
Jackie, I know you are frustrated but are you really talking to him and think he understands. He is like a child now. Just do what needs to b done.you can't argue with him. His demeanor will probably mimic yours. If you are calm, he will be calm. Ok, look for a place, but also remember what you are dealing with. God Bless.
Jackie, me again. Today I'm having one of those days, like time for the nursing home day. I've tried to be calm and outsmart him, but it's not working today. Please accept my apologies for the easy answer yesterday. I can't believe I wrote that one day ago. What a roller coaster this is!