Yesterday morning I had outpatient surgery. Everything went well. But something else happened that has been making me think--a lot.
Of course, I was not looking forward to having surgery. I wasn't really afraid so much as I was dreading it. I wanted to be able to sleep through the night (meaning I didn't want to lie there thinking about it!) so I timed my sleepiness and pain meds and was able to drop into bed and fall right asleep. So far, so good.
At 12:30 a.m. DH woke me up, banging around in the kitchen and turning on the light. I explained to him as calmly as I could that he needed to be quiet so I could sleep. It took me until 2:30 to get back to sleep. At 4:30 he woke me up again, doing the same thing. Another hour of sleep was lost. When the alarm went off at 6:30, I felt like a dead person. When I don't get enough sleep, I'm dizzy. Yesterday I could hardly walk. In fact, getting me from the gurney to the operating table took two people, I was so dizzy. I couldn't walk a straight line going down the hall or to the bathroom. Let's just say that it added a whole other layer of misery to an already stressful situation. And his take on all of this was that I was being a mean old you-know-what to even mention that I needed to be able to sleep, and it wasn't his fault that he kept waking me up.
This morning I realized that being a dementia caregiver sometimes feels like being in an abusive relationship. (And that's not even considering the people who are actively being abused by the person they are caring for, which is a whole different level of suffering.) All our attention has to be focused on another person's well-being, not on ours. We're never supposed to get angry or speak up for ourselves. We're supposed to agree when our spouses say that the sky is orange and the grass is purple. We're supposed to give and give and give, even as we get little or nothing in return. We're supposed to direct most of our financial resources to our spouse's well-being, because they are the ones who are ill—even if we have serious health problems ourselves. We have to isolate ourselves from friends and family and activities we enjoy, because our spouses NEED us. And many of us get to hear that everything all our fault, and that nothing is wrong with our spouses.
Doesn't that sound like the very definition of an abusive relationship? And this goes on year after year. No wonder so many of us are completely shattered by the time it's over. (And that doesn't even consider the grief we feel from the loss of the spouse we used to know.)
For a couple of years now I've known that placement was coming, but it broke my heart just to think about it. I kept seeing flashes of the person my DH used to be. I've not waited the standard "one year too late"--it's been at least two years too long now. But I just couldn't do it. However, the other night, if someone had called in the middle of the night and told me that they had a place for him, I would have dropped him off right then, and never shed a tear.
Years ago I watched a movie about a lawyer who was defending a client who had kicked his wife to death. One night, after a visit by his daughter and the (awful) man she was engaged to, he sadly looked after them as they left and said, "He's going to kick her to death, and he won't even have to use his feet". I think that this disease can do the same thing to caregivers. Even when there is no active physical abuse, it's still abusive to the caregiver. But when we start to think about ourselves and what we need, we feel guilty. We've almost been trained to feel guilty. But this last experience has really, really made me think.
Thanks to Marche for posting the Don McLean lyrics: "When the gates are all down, And the signals are flashin' and the whistle is blowin' in vain, And you stay on the tracks, Ignoring the facts, Well, you can't blame the wreck on the train."
I think I've finally woken up to the fact that I've been sitting on the train tracks, and by golly, there is a train getting really close. Now, am I going to continue to sit here and let myself get run over by the train, or am I going to jump up and run, and save my life? I need to decide one way or the other really soon, because that train is getting closer all the time.
Your post is so powerful, and hit so close to home. I want to share it with everyone I know and say - this is what it is like - would you stay in a a relationship like this, and if you knew someone in an abusive relationship, wouldn't you offer to help? Or, instead of asking how my DH is, at least ask how I am doing from time to time, if you can't be bothered to help?
I have been dealing with my own health issues all winter. And so I totally understand how you feel - everything is for our LO's benefit. Never once has my DH asked how I feel, or if I am okay, or modified his behavior to make things easier (he just woke me from a nap with his banging around the house). And you are so right, we are supposed to stay calm, and supportive of THEIR needs. I've discovered that the best way to tell if I am not feeling well (since I have to ignore how I feel most of the time in favor of my care giving duties) is to analyze my level of patience in dealing with my DH and his behaviors. And if I am losing my patience easily, then I am not well. Talk about putting others before ourselves!
I agree with Vickie, If you can do it, and you think it is time, then "jump up and run" for all your life. I don't think I am sitting on the train tracks yet, but I can hear that whistle blowing round the bend. I'm not far behind you!
Jan K - sounds similar to what I decided in December: if I am going to survive and have a life afterwards, I need to get my health taken care of. I am in the midst of that although some days I wonder if I want to survive this.
Go for it Jan K. Take care of you. As has been said many times - our spouse is going to die but we will be left behind. What condition we are in has a lot to do with how we took care ourselves. Take care of yourself. Yes, there is abuse. Although we can't stop it all, we can take steps to lower the effect it has on us.
Jan k I agree with everyone who posted run! I have heard the whistle and can see the train. It is about 6 months away. I am bringing someone in the house starting next week. If that doesn't work to give me time to take care of myself too. he is going on a list. I still think sometimes I shouldn't do this yet. But, I know deep down I have to.
He just told me he is getting better. Most of the time I cannot make out what he is even saying. But he got that out. Now he is pacing in and out of the house. Never sits. I am so tired making sure he is ok.
Oh, yes, the banging around. I think that after a couple of years my subconscious was set on alert for this. My husband who was previously devoted to yoga and meditation forgot all of that. But, while he could make noise at all hours, he could tolerate less and less noise from any other source.
The phone could not ring, so it and the voice mail messages were on mute/receive. I can't recall watching a dvd or listening to a cd without it being on mute. But, I still had to be smiling and happy all the time because whatever his mood, which must be accepted, mine must adapt.
We had separate bedrooms for the last two-three years. It got to the point that I would sequester the cats with me so they would not bother him, especially during the night. Maybe my fear was without reason but I felt, better safe than sorry.
I neglected my health- physical and emotional for at least five years and am paying for it now. It sounds like you are taking steps to not let this happen to you. Please continue!
Jan K, So very well said. I had never thought of it as abusive but from your comments it really is. I placed my husband about 8 months ago and I was not quite at the end of my rope but I could hear the train coming. I am so grateful I did because honestly if I had waited who knows what could have happened to me. I was emotionally strung out and never realized just how big of a toll this had taken from me until he was placed. I encourage you to do it now and start taking your oxygen so you can live. As I have said before we cannot save them but we can save ourselves. Please do not wait until it is too late.
Jan, I've bookmarked your posting and read it several times. Much wisdom and truth there. For me saving my own life will involve seriously taking care of myself--eating right and exercise are the biggies--plus trying to maintain some creativity and music skills--even though placement does not seem to be in the cards. DH has been in the hospital for two nights, and simply being able to take long hot baths and get two nights of glorious uninterrupted sleep seem better than a luxury spa visit. And what a pleasure not to be smelling poop.
Jan, What you have described needs to be read by everyone on the forum, especially those who are waxing back and forth about this decision. It is not an easy one at all. I think in my case, looking back is always 20202..I should have listened to our neurologist some 3 years ago when he told me to look into facilities. I did but waited a good year before I did that. Then last year things were coming into focus that I was soon not going to be able to manage alone and I was going to have to decide on the ALF or more in home help. AS helpful as my husband tried to be, he was more and more delicate, in ways I didn't suspect and because he didn't complain ever, I had a harder time reading the smoke signals. Then without warning he had a cardiac arrest and I did not have to make that decision. But here I am, just 8 months later and I find life as overwhelming now as I did while I was full time caregiver. Why? Because I did this for 8 long years. There are others who have been doing it longer than that. The thing is that by the time one enters the widow status, unless we are superhuman, we find we are that many years behind in everything...cleaning closets, going through papers, dealing with legal matters...and you find you are as tired if not more so than you ever were before. I think the " I Like" thread is one worth reading especially the comments by those who have placed their loved one. It was not an easy decision but what they are finding is that they are once again gaining strength, both physical and mental, they are getting more organized in some ways that later will be of benefit. I have to echo those who say that when you feel you are getting to the end of your limit for caregiving, don't feel guilty, look into the help offered and figure out what will work best for you and then do it. By all means take care of your health. There is no shame in having to place a loved one, just a broken heart maybe..and if family gripes and are not willing to help in any way, ignore them and do what you must in the best interest of your Loved One and Yourself.
I will be definitely hiring home aides to help, and placing him just for respite so I can take a real vacation. I don't think permanent placement is going to be an option for me, no matter what, because of finances. Now that I'm out of the workforce (but not yet social security age), paying for an assisted living is just not possible, and while I'll be consulting with an elder law attorney, I don't think Medicaid will be possible either, for nursing home placement. I have to plan for my own self-support for the next 25 or 30 years, and just cannot have Medicaid impoverishing me. I went into our May-December marriage with my eyes wide open, and I will stay with him and take care of him as I vowed 20 years ago ("for better or worse" etc.) but as he aged out it has definitely been worst-case scenarios all the way. We had a magical 5 or 6 years, but the last 14 have been a progressive nightmare. Jan said it so well.
Jan, you could have been reading my mind! I've been having the same thoughts. It has been a horrible winter. I don't think I can survive another. I had carpal tunnel surgery three weeks ago, and do you think my load got any lighter? DH has no clue, he can't remember who I am at times. I have been so depressed, just totally beat and fed up. I'm going to read and retread your letter until I can get it sunk in my head! The train is coming around the bend!
I was at the end of my rope. The nurse had said my DH needed to be turned every 2 hours. That would mean setting the clock to do that in addition to getting up and helping him with urinating, him just waking me up, etc. I did not know any aides I could hire and was reconsidering a NH. I thought they would be able to do what I knew I could not continue to do for him and I was very sad. A dear friend who works at our local hospital just happened to stop for a visit. She told me they were cutting the hours of the people at the hospital and she knew which aides were really good ones and would be thrilled to work and make some extra money. She started making phone calls and the very first one she called is an LPN that came over that afternoon and is such a nice person. She and my friend started moving furniture around and got another room set up for my DH to make it easier for nurses to take care of him. She immediately wanted some hours. I got a calendar and she wrote in the nights she could work. Then another nurse came the next day and she filled in the nights she could work. It's costing me about the same as I would have to pay a NH but he's getting excellent care and they are trained to know what to do and I'm getting some rest at night. It might be that the same cutting back is happening at other hospitals and would be a good source to look for some help.
Do see an eldercare attorney. There are various ways to protect assets for yourself and your husband's care.
However, Medicaid does not impoverish you. It is a welfare program and only kicks in once your finances drop below a certain level. As a spouse you get certain protections (the house, a car, $X) which vary by state. Without Medicaid someone who places a spouse in LTC is in danger of losing everything, house, car and all savings. A good eldercare lawyer should be able to guide you in making the most. A simple example is putting savings into paying down the mortgage, making home improvements and buying a new car. A lien can be put on your house but that would only make a difference if you sold your home or if you died. Another method I have read about is turning retirement accounts into annuities only in your name. But I am not qualified to give any advice of this kind.
This is not to say that once Medicaid kicks in you will be doing well. A number of people have mentioned that Medicaid allowed them to keep their house but they didn't have enough income to live in it.
But my point is that moving your husband might impoverish you, but not Medicaid.
And to ask the always asked question, is your husband a veteran? I was just talking with a friend who told me that her FIL moved into a VA NH and the cost was $200/month or lower. The building didn't look great but she thought the staff and service were wonderful.
Hi Paul--I do have an appointment with an elder law attorney on April 30. The situation is a little more complicated than usual, because I own the house my daughter, SIL, and three grandchildren live in. I own that house and my own house free and clear, and really don't want DHs care to impinge on their future. In any case, he will be discharged to Rehab on Sunday, and another of the local Hospices will be assessing him for Medicare-billed care. Assuming that he does not benefit from Rehab.--and I don't' believe that he will--they are sending him for two weeks to give me a longer break--then this Hospice thinks he will meet their criteria. I do have the contact information for the local VA services (he is a WWII veteran--served on Guadalcanal as a teen-ager)…and if need be, we'll check out the VA. I live a frugal, somewhat minimalist lifestyle by choice, and could run my home on what Community spouse Medicaid would leave me--but I am only 64, and at this early point in my own journey to old age, don't want any Medicaid infringement on my own next 25 or 30 years.
The family came to the door as I was trying to finish the above post. I meant to say thank you very much, Paul, for the insights and the good information. I am definitely listening.
I had gotten to the point where I had nightmares about Medicaid. I had often posted here that I consulted three lawyers about my husband and our circumstances but then not that long ago realized I had actually consulted four (although one was a guardianship specialist).
The reason I bring this up is that they had varying viewpoints. You said "but I am only 64, and at this early point in my own journey to old age, don't want any Medicaid infringement on my own next 25 or 30 years." This goes back a couple of years so I can't say for sure and certain, but I think I was told by one that "after you qualify for Medicaid, you can inherit, win the lottery, whatever, and it can't be touched".
(Even if my memory is correct in being told that, I don't know if it is correct or not; just thought I would pass it on.)
Abby, I don't know about that. The community spouse is only allowed to have so much…around $90,000 I believe, and an income of around $2,400 per month. Anything above that has to be spent down or paid to Dept. of Social Services as an overage, and until you're back within the limits, the Medicaid is lost and vendors can't bill. I'm just going by what I saw happening to my caseload in NY when I was still in the workforce. I am actually cautiously optimistic that I can avoid Medicaid, but want to talk to the elder law attorney anyway, especially that we are in the Heartland now, instead of the Big Apple. : )
I'm 58. I'm blessed to have very good retirement plan of my own, and I've done some things to protect that and some inheritance for my children if it comes to Medicaid. My fear actually is that my husband's income and mine will be too large to qualify but too small to pay a nursing home when I run out of money. I actually don't think it is likely that he will outlive my nest egg, but it is discouraging to watch it go.
What I wonder is whether to scrimp and save and try to make my nest egg last as long as possible, or whether to spend some money on travel with my kids and things I enjoy, figuring if I am going to use up my savings I don't want to spend it all on him. I do know in the next couple of years I should buy a new car and a new refrigerator, as those are things that Medicaid wouldn't count. I love my Scion XB so I can't see spending a lot of money on a car.
Pam, a couple of thoughts. You are in the middle-class black hole like most of us--too much money to be Medicaid-eligible, but not enough to pay privately for nursing home placement. Most people will tell you that if you are at risk for losing assets to Medicaid, to go ahead and do what spending is allowed. For instance, make sure you own a great car (so you can drive it back and forth to the nursing home, lol--everybody makes that joke--go ahead and get a Rolls-Royce.). Do whatever travel you want to, as Medicaid does not care about that. It is OK to do upgrades on your home--we had a pool at the NY house, and I spent an arm and a leg to heat it. What a self-indulgent luxury--but I figured, hey, why not? It helped my own health to swim a lot. Don't count on your husband not outliving your nest egg. My DH comes from a very short-lived family. They all die quickly at relatively young ages from heart attacks or cancer, and he has had significant heart disease for 25 years. He has chronologically outlived his father, his son, and all his brothers. It is flat-out unbelievable that he is still alive at 89, pooping and falling and crazy as a bedbug--going on and on like the Energizer Bunny or a Timex watch (takes a lickin' and keeps on tickin'). It isn't that I don't love him--I do. But who in God's green earth would have thought he would have lived this long. So you can't really count on them dying so that you can get a rest or conserve the net worth.
If you are pretty sure you are going to go Medicaid route in the near future, i too would consider spending down on things that are worthwhile like doing things with the family if possible. those are memories that will also be banked for the future. we never know if we will have the ability or funds to do things in the future so if you have to spend it somewhere consider it for the family as well. yes so many in the donut Medicaid donut hole. too much to qualify but not enough for thousands a year in NH costs. divvi
I've seen families with significant ties to foreign countries spend down assets to make visits to relatives overseas before Medicaid makes that impossible to afford.
Elizabeth, the maximum amount the federal govt allows is over $100,000 but states can opt for a lower amount. This is one complexity of this law, it is different in every state.
Yes, having that 2nd house makes it more complicated. You don't live in it so on the surface you could be made to sell it if you are in a community property state. BUT there may be a way out and be sure to ask the eldercare attorney. I read that you may be able to retain ownership of property you live in if it produces revenue for you. So do daughter and SIL pay you rent? That might be a way out. I only happened on this rule and have no idea how it works in practice but do ask.
Good advice on intelligently spending down, such as buying a great car, paying off mortgage and/or making improvements/repairs to house. However, I disagree on buying a Rolls or any luxury car. Many of these cars have very high maintenance costs, I remember an article years ago in Rolling Stone about someone who bought one and it constantly broke down. One acquaintance bought the car of his dreams, it was one he wanted when he was young. A few months later I asked him about it and he said he sold it, he said the upkeep was way too much trouble.
One person described to me the Medicaid spending down process. There was a meeting with them, their lawyer and the Medicaid rep. She was told she had 30 or 60 days to spend down to a certain level and a list of allowable ways to spend. So while her saving shrunk a lot much of it went into improving house and paying down mortgage, so she had less cash but money didn't go poof, it improved her life and ultimately helped lower her monthly expenses.
Hi Paul--I was just joking about buying a Rolls-Royce. As you pointed out, it can be an advantageous time to buy a good quality, dependable car, but of course the expense to keep it gassed up and functioning well needs to be carefully considered. In terms of the elder law consult: One of the main questions I want to ask the attorney is how that second house will impact Medicaid. It isn't "formally" rented out to the family. There is no lease, and they are not paying rent at the moment. Another question for the attorney: I don't want to take social security until my full retirement age of 66. I may not even take it then. (Age 70 would be great.) Can Medicaid force me to take it? Even if it will all go to the Medicaid spend down? Scary stuff. Anyway, DH goes to Rehab. tomorrow at 1pm. The Rehab. is just two or three minutes from our house. He cannot even stand up at the moment--still has IV fluids running--is very confused and keeps trying to get out of bed…or else just conks out and sleeps a lot when they give him his Ativan. I can't tell if he is seriously doped up in an attempt to control his behaviors, or if his mobility has really deteriorated that much. Scary, scary stuff.
DH had a bad fall his first night in Rehab. He then turned blue and had to have oxygen for a couple days. He is completely disoriented--I don't think he even knows me. The nurse called me this afternoon to say his jugular veins are engorged--they think he may be in fluid overload. (from all the IV fluids he received in the hospital, although the IV has been out for two days. They are doing a chest X-ray, and the doctor has ordered an extra dose of Lasix. I will be over there later--I've been there once or twice a day since they transferred him in from the hospital. He is just not picking up speed. I don't know how they can do anything with his strength and balance when he doesn't even seem to be medically stable, and his mental status is much worse than before Apr. 14 when this big downturn started. Scary stuff. I look at his watch and extra rosary on his nightstand at home, and his spare slippers under his bedside commode, and I just feel like I want to stick him in the car and bring him straight back home where he belongs. It's strange how they can drive you crazy and drain you dry, but you miss them so much when they're not home. I am doing a lot of sleeping and just watching mindless stuff by streaming video on my computer. I suppose I should be making better use of my time, but I'm too worried and hyper.
elizabeth, sleeping and taking it easy is exactly what you should be doing. Don't put pressure on yourself to accomplish anything other than taking care of you and your husband.
Fiona, he was bad again tonight. They had him up in a wheelchair, but he had taken off his oxygen and taken off his socks and slippers, was just talking gibberish and making all kinds of weird random movements. I am not too thrilled with the staff and the care in this Rehab--they seem to do just the bare minimum they can get away with, and there is no sense of interest or caring, or at least, not much. I don't think he'll be there too long anyway…he can sit in a chair and talk gibberish at home just as well.
elizabeth - all that fluid retention could also be an early sign of congestive heart disease. A friend that died last winter had those symptoms. hope the lasix works.
Charlotte--Yes, he is in congestive heart failure. I'm hoping it resolves with medication and the oxygen. He was last hospitalized with it in 2009, but it hasn't been an issue since then--until now.
Elizabeth, I don't want to scare you but with CHF and the level of severity of it, one can live on for a long time...or not. When my husband was admitted to hospital last Aug, it was thought he had pneumonia and he was started on IV antibiotics. The first day there he seemed to be responding but then had a difficult night. I thought because the nurses did not set him up on his Cpap machine. On Sat he seemed cheerful enough but his output was not what the doctors wanted to see. He was given more medications for that. He ended up with pulmonary edema and in the end, his heart could not pump the blood forward, his heart went into ventricular fib and cardiac arrest.The doctors were shocked as this was not expected. The doctor he had, was one to be straight forward about prognosis and had he expected this turn he would have told me. So just be prepared for anything.
In that same frame of mind, if there is the slightest chance that he might not survive, do not wait to check out funeral homes and think what he and you would want. In my case, I had not been given any indication that my husband's cardiac condition was of such a degree that hospice would be needed soon...and the Monday following his death I was put in the position of funeral home shopping. I would advise anyone whose LO is faced with health issues other than the ALZ as the only medical complication, don't do what I did, go forward as painful as it sounds and do that homework now.
Thanks, Mimi. I have read that sudden death can occur unexpectedly with CHF, and of course, a puff of wind could blow him away anytime…he's very fragile. Today I have been much happier with the care--he is up in a W/C in street clothes with his oxygen on--went down for physical therapy, which I observed, and all the daytime staff seemed knowledgeable and professional. They had showered him, washed his hair, and shaved him. He is mentally just out of it, and physically just so weak, but I talked to the social worker at length and she has already been contacted by the Hospice that is flexible about the six-month prognosis (or not) for an Alzheimers client. The social worker feels a Hospice referral is totally appropriate. They will try to do something with his strength and balance in the Rehab.--try to make him a little safer on his transfers and ambulation, if he is able, and then we'll bring him home, after coordinating a decent discharge plan, of course. I can't remember who advised me to contact a different Hospice when the first one turned him down, but those words were truly wise, and echoed by the hospital discharge planner. Hospices, believe it or not, can differ in their admission criteria. And Mimi, when we moved down from New York I cashed out his funeral fund. Last month I took the money and pre-paid his funeral here in Ohio with transportation costs back to New York for interment with military honors. It is just putting back in place what he wanted and what had been pre-planned and paid for for years before the move.
A lot has been going on. He is markedly deteriorating, and the tentative plan I am pulling together with Hospice (not the first one…this is the other Hospice), the Rehab. social worker, and their OT, PT, and ST is that he will come home to Medicare-billed Hospice services when his 20 days of Rehab. are complete. This will be May 9 or maybe the 10th. I spoke with the elder law attorney's office, and we decided to cancel the Medicaid consultation for now. I'm crossing my fingers that DH will never need it. If we can keep him home with Hospice in place, that is soooooo what he has always wanted…just to be in his own home with the family, in the old-fashioned way.
Well, the Rehab. has managed to lose his eyeglasses, not that he is trying to read or watch TV anyway. His mouth is a mess--dry, red, cruddy-looking tongue, and white lesions that look like thrush. Plus his upper lip is swollen and pink.I think I'm the only one who gives him any mouth care. I told the nurse I would like the doctor to take a look at his mouth…so we shall see. The nurse thought his mouth looked normal. Well, duh. Here's news you can use, sweetie. A hugely swollen bright pink upper lip with a rough, dry, bumpy red tongue with white patches all over the sides and underneath is not normal. Where did you go to school? Oh, pardon me for assuming. Anyway, I went in and gave him a haircut yesterday, also shaved him and did his fingernails. If one more staff member tells me they don't know him, or "don't work on this side", or that they've been off and don't know anything, or that they're a "float", I'm going to scream. The nurse commented (at 9pm Weds. night), that the doctor only comes on Thursdays. I said, "Well, tomorrow is Thursday--leave a message to have him look at DH's mouth." Doh!! Don't you at least have to know what day it is to get through nursing school? (Lest anyone think I'm being too mean, I'm an RN with 42 years experience.)
The Hospice social worker was sweet, and discussed all the services they can provide, leaving for last what I really wanted to know--how much aide time could they give? Be still my heart--they offer one hour per day.
Hang onto the rope, elizabeth. We're pulling for you. Sounds like a conference with the powers who be is in order - and quickly. Did the doctor see him today?
All so overwhelming ! Isn't what we all face Soo heartbreaking and then we must worry about the financial Impact too!
I am also 64 and am very concerned about how I will live in New York with its high cost of living and care for my DH who is 66 and in perfect health but for the AD. Such an irony!
How are things going? Give us an update when you can. Like Charlotte said, it doesn't mean we don't care just because we don't post comments all the time. We care.
They still cannot find his eyeglasses. The doctor looked at his mouth and said it was thrush, then forgot to write the order for an anti-fungal. The evening nurse said she has some Nystatin swish-and-spit leftover from somebody else, so will use it for DH until they can get the doc to write the order. (Nothing like true professionalism and standards of practice.) Lorrie, I hear you about NY. That's why we moved to the Heartland. And thanks, everyone--I promise to try to be concise, and not too many capital letters and exclamation points.
You can use all the caps and exclamation marks you want. Throw in some $#%&?!?!! whenever you need to. This is a safe place to vent and sometimes the only place where anyone understands. Sorry you are struggling right now!
Elizabeth, we have had great service from our Hospice. I have an aide for an hour every weekday. After he became confined to the bed I even had someone on weekends for a while until I learned how to do the bath and change diapers, sheets and pads with him in the bed, all without hurting myself. He also has the nurse visit twice a week and social worker and Chaplain (sp) come about once a month. I also recently started having a hospice volunteer come one morning a week so I can go for exercise.
With the two paid caregivers I have for 2 other mornings a week I really get out as much as I want. I just had my 77th birthday last week and I don't have the energy to be running all the time.
Elizabeth, I'm reading all of it. I just don't have anything to offer you because I'm not in your position (yet!). I bookmark a lot of things for future reference. All I can say, for the present, is keep on keepin' on! Stay strong.
I spent six hours at the Rehab today (Sunday). When I first got there he was agitated and had removed his shirt and his socks. It was after lunch, but he was not shaved and his room was a mess. I dressed him and shaved him, made the bed and tidied up. No one would answer the call light after I asked for help toileting him and was told by the nurse to put the call light on. After I put him on the pot myself, one of the aides finally came in. The next two times I just took him in the bathroom and helped him myself. I just sat with him all afternoon, and he was fine as long as I was there. They had some pentecostal gospel singers for entertainment (very nice, holy people--not our religion, but hey, it's all good). Then everybody got ice cream cones. I fed him a little supper--he is funny--if it is something he likes, like ice cream, he will feed himself. If it is just normal, not-a-treat food, he has to be fed. His speech has gotten better--no more muttering and gibberish--and he is stronger on his transfers. They found his eyeglasses, so I just brought them home. He is not making any effort to read or watch TV. All he wants is for me to be there (yeah, because I'm the only one who provides any care)--and he just begs and begs me to take him home. Well, it should only be 4 or 5 more days. I'm just waiting for Hospice to change their minds and say that because he's brightening up a little, they won't take him. I'm getting very skeptical and cynical about caregiving entities.
Elizabeth, I really sympathize with all the issues you are dealing with. It's so difficult to take care of them at this stage and you should be able to depend on the staff at the Rehab. I'm so sorry this hasn't happened. It just makes it so hard for you to get any rest while he's in care and for him to feel safe. I hope things get better very soon. We are here for you. ((Hugs))!
Yeah, it's not a break when I have to go everyday and do the care that the staff is supposed to. Also, I just can't relax or sleep well because I'm worried about him. If Hospice does do what they said they will…and open the case…getting me equipment I need at home and so forth…I don't see how I can use their respite services when their respite is to put him back in this Rehab. for five days. I can have that once a month. It sounds like heaven, but I know DH will just be warehoused and not cared for even with the basic nurses' aide tasks…so how does that help me? OK, end of rant.
My husband went from an unexpected hospitalization to a rehab to an alf in six weeks. Hospital was from ICU to step down, everything was then "hurry up and wait" until I was told I had two hours to choose a rehab, then knew I had about 2 weeks to choose an alf.
There were a couple of discussions at alf about who was responsible for what. Fortunately, he was Hospice certified within a couple of days. Now, I had been told that for whatever reason, he was not eligible for Hospice while in rehab.
Hospice was his wish and intention since before his illness. Although it was for a short period of time, things improved once he was certified.
elizabeth, I feel for you. You are having much the same experience we had when Rich was in rehab in a nursing home last June for his broken knee. You would think they would give him the best care hoping you would place him there permanently so they could make a ton of money. But instead the regular aides just let me and the aide I pay for privately do all the work. When the private aide left at night around 8pm, all the nh aides were upset because they would have to do the work.
Oh did I mention while in the nh rehab, I chose to do his laundry and they sent home a pantfull of bowel movement in his pj's; when I asked them why they didn't at least empty it in the toilet the response I got was "You're doing the laundry, it's not our job to clean his clothes before they are washed". I doubt they would have sent 2 days worth of bm to their own laundry.