I think I just need to bounce this off of someone who cares and knows how it feels. My dh had a blackout and fall last week as I reported on another discussion. Now that we are home from the hospital, my husband can't seem to understand stand up and I am wondering what to do when he won't stand at all. I asked my doctor who said to put him into convalescent home. Well, that is not an option as we both agreed to living at home. He declined so very fast after the hospital (a week ago) and it is not improving. I know that palative and hospice start after dh becomes totally bedridden - I wonder what that means? The last dr. at the hospital said to keep him walking but that is really difficult to do even in the house. Just getting him out of his chair or wheelchair takes about 10 mins. I know others of you have this same issue. Thanks for listening and I sincerely hope you all have a Good Thanksgiving as I am thankful for all of you and this site.
brindle, After my husband's hospital stay last February, he would not stand or walk without 2 people helping him. He would only walk or I should say 2 steps to his recliner from the bed. I thought he would never walk again, however, after about a week he started walking again.
My mom "forgot" how to walk from one day to the next. We had in home help already in place as both my parents needed help. When they don't know what the legs are for anymore they cannot help themselves help you. If you don't have help at home now, you either need to see about getting some kind of help now and if you haven not had training in transferring you must get that or you will get hurt..I got hurt 13 years ago and am paying for it now and am in PT! I would contact the local hospice first and they can help make an assessment for your situation at home, help with some training perhaps, and despite our best intentions, sometimes we cannot, for our safety and that of our LO, keep them at home if we don't have the support we will need on a daily basis. I am not there yet but worry about it as my DH has walking issues having to do with diabetic neuropathy..balance issues too. I know there are others here who can give you better advice but off the top of my head, I would say listen to the medical professionals suggestions as to care..for both of you..Keep us posted..and hugs all around...
If you plan on keeping him at home then I would also be looking into a hospital bed if you don't have one already. In the meantime trying doing your own PT by exercising his legs which will keep the blood flowing. We will pray he will remember how to walk like Kadee's husband. If not, you may be looking at bedridden most of the time or moving him from bed to a chair right next to it.
Thanks for the comments and prayers. I sent e-mails to two places today to check them out regarding help. The one group I tried a few months ago was not a good fit and I was hesitent to try another. The nurse that visited to check for safety issues a month ago gave me a few agencies to look into. The two I e-mailed say they work with AD people. That is really important. They are different and most people (even the health care providers) don't seem to understand. I guess it is still too new. Hope you all have a great weekend. Continue to pray as I do for all of you.
Brindle, your LO does NOT have to be bedridden to get Hospice care. Check with your doctor for a referral to the local hospice group. They will do an evaluation and decide whether or not he qualifies. If he does qualify, this is a lot less expensive than hiring help. I had hospice for my wife for about 6 months after she was hospitalized with pneumonia. She was ambulatory, and went to adult day care 3 days a week. She was discharged from hospice because according to medicare guidelines she had not deteriorated. My only comment to that is that they were not living with her 24/7.
marsh--you are so right. Even our Hospice Nurse and CNA could see my DHs decline, but the measures the Medicare Guidlines require are more physical and his decline wasn't in those areas. They will be back though, once he does decline in the areas required. The good news is that, I was told the are doing trials on a Pallitive Care Program, on the East Side of the State, and elsewhere, which would be less than full Hospice but provide us the back up we need now.
brindle, The others are correct, you do not have to be bedridden to receive Hospice care. Get your Doctor to do a referral to evaluate, if he will not then call Hospice yourself and request it. If your husband is signed on with them they will provide all durable medical equipment such as hospital bed etc. Our Hospice provided training for me to use the hoyer lift for transfers and so much more. I now use the lift to put him into bed, out of bed, into wheel chair, out of wheel chair, into gerri chair and so on and on it goes.
When my husband started having the problems with walking we realized if we did not confine him to chair or bed then we would be dealing with a broken hip. He would walk and could walk but would fall, sit down in the middle of the floor etc. They forget how to walk, not that they cannot, they just forget how.
I agree, call Hospice, get evaluated, get signed up. THey will provide a hospital bed, and many other things that you won't have to...We already had a wheelchair, but they would have provided that as well. My husband was on hospice, then off, then back on...the first time he was on was 7/19/10...then off...then back on...he passed away 11/6/10. Brindle, it might not seem like "the end", but you never know...and it is good to get an opinion of the Hospice people - our dr. getting on board was not an issue AT ALL! They faxed the info to the hospice...having hospice evaluate and get him signed up might be harder, but they have a "book with tabs/lists" of things that will help you...blacking out, not walking, those things are "extras" in the world of "sign up"...They can get you help with getting him bathed several times a week, this might be THE BEST thing about it...and then a nurse to check him out at least once a week...I hope this info helps.
DH sits in his recliner most of the time. He has a very hard time getting up and when he walks, he shuffles. He doesn't talk much any more and when he does it's very repetitive. I try not to worry--what ever will be will be--but I really don't know what to expect next.
He sleeps well and eats well
I took him to a different neurologist a while back and that was a waswte of time. DH told me that our relationship wouldn't be the same. Right in front of the doctor. I guess he was upset because I took him to the doctor. At any rate The doctor said to make another appointment after I had collected all of his previous exrays and dr's reports.. And he left the ofice.
Ah, Mawzy, we want the best care for our LO but what can a neuro do once there's been a diagnosis and meds prescribed? I haven't been back for almost two years. The neuro calls about once every six months and asks questions. I think this is for his own statistics, although I'm sure my insurance gets billed for these calls. The academic hospital he is in does research on FTD and he is still interested in finding out whether dh has this. However he does not press me to have any more tests done (and I wouldn't do it anyway). The pcp takes care of prescriptions.
JeannetteB--Thanks so much. I think your response pretty much covers my question. Our pcp prescribes his meds but since he's in good health, I don't take him in to see him. I guess I just wait and see.
Thank you all for your comments. A Nurse from Kaiser came out a while back and checked for safety and said as long as my DH could walk, they would not recommend Pallative/Hospice care. My dh has deteriorated since that visit. I am looking into help and hope I find some soon. We already have the hospital bed (which we rent) and I ordered a lift chair to see if that will help. We haven't been outside to walk for over a week now. Hard enough to get him changed and from one room to the other. Once dh is up and walking he is ok. I wondered if the recliner was too far back for him as he seems ok getting out of the bed so I put pillows there this morning. We shall see. Mornings seem to be better anyway. Just don't really want him bedridden if I can help it. Have a great day.
brindle, both my Mother and my husband could walk with a walker when they were admitted to Hospice. I realize now they have tightened up the rules. They could not bathe themselves or he could not shave himself, choose his clothes, put them on or tie his shoes. He could not hold a sandwich himself any larger than half a hot dog. They were both continent. I was also told by a visiting nurse it was too early for Hospice, but when I called Hospice for an evaluation they were admitted into their program. If you feel he is ready, call Hospice yourself and they will send a nurse out to evaluate him. Do not help him answer questions or get up etc. while they are there.
My DH is continent. But cannot shower himself and cannot really shave himself. I pick out his clothes for church and if we re going out. I also need to remind him every day to change his underwer. Funny thing--Last time I washed clothes, I had 8 t-shirts and one pair of shorts. 4 pr of socks and 8 handkerchiefs. It had been 4 days. I pointed this out to him and he said I had lost his shorts in the wash. Sigh.
He has trouble getting up from his chair and shuffles when he walks. We hae a split-level house and has to really hang on to the railing going down stairs.
Does this sound like he might need hospice or something? I just dont know.
Mawzy, my DH told me a few days ago that his feelings for me have changed. He couldn't tell me how but that they had changed. I was not upset about it (very much) not unless he was to get abusive. Brindle, I was told that if my DH fell and went to the hospital and then went to the NH for two weeks that THEN I would get some outside help but it is not until THEN because they will know and see for themselves how bad he really is. Until then I am going to be basicly tough out of luck. I can kind of see how that would be the case but I was hoping that could be avoided but maybe it can't be avoided.
Can you tell me how do you call Hospice? Is there a local number to call? I thought I could only use it if my medical insurance doctor called it in? Would I lose my insurance doing this?
Brindle, look in the yellow pages of your phone book under "hospice". Our rural area lists 3. For medicare hospice you need a referal from your doctor, but you can make the initial contact and ask them to do an evaluation. Don't make any assumptions regarding whether or not your LO is eligible. Also, you will NOT lose your insurance. If you have medicare, and they approve hospice, medicare will pay for it.
And Brindle---when they come out do not nhave your DH all spiffed up and do not answer for him. Answer only when they ask you directly. They need to see how he actually is--not what you tell/show them.
Brindle, ou definitely will not lose our insurance. They will bill Medicare for their services, you never see a bill. Our personal Hospice group has four offices in the Houston area, with others in Austin, Dallas and Ft. Worth. It seems like every day, I see another sign "xxxxxx Hospice Group". There is such a demand and they are so much help, especially if the patient is still home. If one turns you down, do not hesitate to call a second one. Personal experience was that our doctor wrote a prescription that said "Evaluate for Hospice". They accepted a xerox cop of that.. Number one agency sent out a woman who had more trouble in her life than we did and she shrugged and said he wasn't nearly ready for Hospice. The next week I called the second agency and they took him on the spot. Added note: He died six weeks later. Not ready????? I so wanted to call the first agency and tell them how wrong they were in their assessment. Point here is to be aggressive and don't listen to anyone who doesn't work with Hospice and if you are not confortable with the first agency, call another. You will be so glad you did.
This morning it was the worse one yet. He would not get up from the bed from a sitting position. He was wet from urine and of course the regular morning bm. When I asked dh to stand he said ok and then scooted sideways along with the poop! I tried cleaning him from a lying down position but he would not turn onto his side. Poop was on everything! I finally got dh cleaned and the bed changed (this took about an hour). Had him eat sitting on the side of the bed. Finally he got all the way up and sat in the wheelchair. I am exhausted. How in the world do you change someone who will not move? How do you get them up higher in the bed? How do you get any kind of disposables on? HELP!
Brindle, do you have a hospital bed? That will make the "job" much easier. To change them you adjust the hospital bed to a height that is comfortable for you and easiest on your back. With the opposite side of the bed rail up you turn him on his side and clean from that angle....you can also put the disposable underwear on from that position, too. You will not be able to use pullups but you can use the ones with the tab. Like most things, it is awkward at first, but after a while I was able to even change the sheets while he was in the bed.
Getting them higher in the bed is a trick when you are alone, but it can be done. When making up the bed put a draw sheet under him (you can google this to see what I mean). Put the head of the bed down and raise the lower end of the bed. You will then have to get behind and pull on the draw sheet. Maybe you can get a nurse or home health aide in to show you how to do this.
I remember that you both want him to live at home, but at some point in time that might not be the best thing for either of you.
This is a tough place you are in......if I can give you any more hints, just ask....
if you havent already a plan for inhome help its probably is time to consider this. it will give you an extra helper to move him and they can give you ideas on how to clean him. Sandi has given you good input but seeing it in action you learn it faster. a hospital bed is a definate plus . and like she mentioned tab diapers would work better if you use the side rolling method.
Agree with Divvi and Sandi - if you can get someone who'll come just for the changing, but frequently, that will help. Another thing is a GAIT BELT - a strap you put around his chest, with canvas handles on it. You buckle it up and then pull on the loops.. much easier than trying to handle him under his arms for instance.
Go for hospice, and even if you later get "kicked off" of hospice you'll have a hospital bed and you'll have a lot of knowledge from the nurses and CNAs that come out.
Bedridden makes things easier, except for the poop. Buy a cheap tv if he'll watch it, and relax. There really isn't much point in giving him "exercise" right now, it's not like he's going to improve -sorry, but that's the unvarnished truth. I have our CNA Andrew come five mornings a week to change him, get him onto the commode and bathe him, shave him, etc. Usually takes an hour or two; sometimes he stays longer so I can get away. He also comes every evening for the evening turnaround, which takes less than an hour. I'm lucky, and this can't go on forever before we go broke, but it's a lot cheaper than other possibilities.
Thanks for the input. I did try putting dh on his side to clean him but he refused to budge even with me pushing like crazy he would not stay holding the rail. In the ER there were two people doing this and am not surprised. Good idea about lifting the foot of the bed. That may help get him up higher. Yes, we do have the hospital bed that we rent. I do understand about the draw sheet. Don't think I have room to move the bed to get behind it as it is already extra long and our bedroom is not that big.
brindle, it might be time to move the Hospital Bed from the bedroom to another larger room. Mary has Dave's in a lovely sunroom and I had Paul in the family room/kitchen. Of course, mine was "short term" but it put him in with the family and not stuck in a room alone. This would especially be a worthwhile option if you would be able to walk all around the bed as needed. What the heck, few of us have company anyway.
There is a draw sheet called a slide sheet, which makes it easier to move the patient, especially higher up in bed. It is the same size and shape as a regular draw sheet, but the material is slick, like a polyester.
I moved all of the furniture out of the study and it became the room for my DH's hospital bed. IT's essential that you can get on all sides of the bed. Remember that when the foot is higher, they will slide to the top of the bed easier..but you will need to use a draw sheet (slide sheet) to move them. They don't UNDERSTAND 'hold on to the side rails"... I remember trying to show my husband how to get up on his knees when he fell. Not a clue what I was talking about. the draw sheet can be pulled out and around the patient..and tied to the side rail..holding them over on their side. (wish I could demonstate this..) Imagine it is beneath their upper torso, like a big band, Pull it over to the side with him on top of it and he will roll to the side with it. tie in a big knot on the siderail..and then, you can clean his lower half that is 'exposed'.
We've all worked out these tricks without training in a hospital.... and what works for one will not work for the other... We used LOTS of prop pillows and rolled up bath towels to keep my DH on his side.
I will look into the slide sheet. I was an aid in my younger years (in college) so was used to bathing patients in bed but they were able to turn on their sides and hold on. I know about the pillows too because we want them to change position to stop bed sores but that is a good reminder. As for the bed, it would make sense for me to take out my bed and dresser to make more room. The family room/kitchen is smaller because of the island. Imore, true about the company. My kids come over once in a while but no one else. Too difficult to entertain anyway - just too tired. Hope you all have a good night.
I am always encouraged when I read the help I get here.. My DH shuffles, knees hurt, can barely get in the car,,, not his problem, the car's too small , he says..........Mentally, he drifts, makes little sense and certainly cannot be depended on to hold a thought for more than a second.. sits and stares at the wall, well, you all know the story.. But the latest, he has heard from some of the old guys,, who by the way, do not have dementia, that knee surgery will fix EVERYTHING... I listened to this for weeks thinking that the worst might be for this 86 year old to have knee surgery,,anyway, I made an appointment for Thursday with an Orthopedic surgeon.. Now DH wants BOTH knees replaced.. I am so exhausted trying to explain anything to him that I am now resigned to whatever the surgeon wants, I'll do.. I've explained to DH that this could mean weeks/months in a rehab center...Also, that I, a 100 lb wonder will not be capable of getting him (230 lbs) up and down stairs, bathed and all the other daily routine.. His answer" He'd sleep in his chair,, the problem of bathing, His answer: take him to the Y and he'd shower there.. I know you all have no answers but gosh, it is good to vent.. Pray for Thursday and it's outcome.. Love you all.
peggy i hope the appt goes as you want it not like the surgeon wants. :) its going to be a super major issue with him if the surgery takes place please make sure the dr is on board about how long he will need rehab and away from home. it may be a way for you to have some respite but keep in mind he may not respond like he should an dyou may need to have him placed later if you cant care for him after. hopefully he will respond as planned and i would surely go over all the what 'ifs' with the dr prior to surgery plans. good luck divvi
Thanks, divvi.. I have begun a list of things to cover with the dr.. Rehab and general recuperation will not be easy for DH..He is a pistol on a daily basis so I am ready for the worst... or think I am..All this coupled with his overall attitude is not going to be easy... I have tried to explain to DH some of the things to expect.. but his opinion is that it WILL NOT happen to HIM...Apparently he knows something I don't.. Back to my list.. Thanks for your good wishes..AND prayers... Peggy
Peggy, try to talk to the surgeon ahead of time about your concerns. He may see it your way and your DH will not be mad at you if he does not have surgery. My DH is 88 and there is no way I would agree to have this done.
It was the ANESTHESIA during my DH's hip transplant that changed him dramatically from a gentle nice man to one who bit me and anyone else who came near him,...to socking me in the jaw... and every other indignity one can imagine. He was able to rip off his hospital gown and expose his aged nude body in a nano-second if and when he wanted to. No matter WHO was in the room. It took about four weeks for the worst of this to wear off...and even then, he never returned to being the person he was before he fell. Add that to the list...and read up on "effects of anesthesia on dementia patients".
Peggy, Bama is right in my estimation. Any surgery seems to "do something" to their minds and no way would I consider it either. I would think an ethical Surgeon would see and understand this and tell your DH surgery would not be of help to him. My DH at age 73 also wanted surgery - or anything to relieve him of his dehabiliting back pain but his Doctors and I all agreed he should not have it under the circumstances. There explaination to him went over better than mine. Good Luck.
I have called and rescheduled the appointment to give me time to talk to the surgeon before DH sees him... I just have this gut feeling that things could be a lot worse.. He does have trouble getting around but part, I believe to be the shuffling, thereby not exercising his knee in any way or fashion..He , essentially slides thru the day...DH is adamant about this and tonight said, he'd be out and back at the Y in a week... Well, that may be for a 40 year old.. He's 86, has cancer, dementia, macular and arthritis.. Not exactly a clean slate to build on here..Getting back to the Y is no big deal since he goes to sit by the pool and lounge in the whirlpool, but he won't do even that with all his problems... My goodness, I wish it were all as easy and simple as he see's it..I'll take your advise and let the Dr. be the bad guy... Thanks, everyone for your input..Peggy
Brindle - any sheet will work. Years ago when I was an aide in a hospital we just used the regular single sheets. Until you can find the fancy ones made just for that - use a sheet. If you don't have single, fold a queen or if you have an older one, tear it to fit or go to a thrift store. Another option to look is Vermont Country Store. My sister bought some large, water proof ones to put under her husband, but first we put a sheet down, then the water proof on it. this was all put under her husband. the suggestion to go to a hospital or nursing home to see how to do it is a great idea.