MIL has declined and now won't / can't get out of bed. She won't let the caregiver get her out of bed and I'm sure from not using her legs enough that she can't stay up. She already has a hospital bed at home with rails. Hospice has been coming a couple of times during the week, along with a Dr.
The other day the Dr. told the caregiver to call the ambulance (cuz she's moaning, which she does all the time). She gets there and there is nothing wrong. I think the Dr. must not know anything about Alz. Stupid...
Now she is getting a patient lift, which I don't understand. If the bed goes up and down the tranfer to the wheelchair isn't bad. What is the point if you can't move her, why lift to a chair and then you can't get her on the toilet since the patient lift won't fit in the bathroom? She's wearing diapers and has rubber sheets.
I just wanted some feedback to help me understand. Someone tells the family to do or get something and they don't ask questions?
I can tell she has declined quite a bit. She won't walk and just looks up at the ceiling mumbling. Thanks all
Mitsy... what you said here surprises me. I am not sure what this doctor was thinking. Hospice is for palliative/comfort. Moaning is not something that would need hospital intervention. It is probably one of two things. It is either her way to communicate since she can no longer form words, or it is a sign of pain that she can not express.
The non verbal signs of pain include:
1) Facial grimicing- BIG CLUE, you know that little furrow in the brow?
2) Tense body language- They will stiffen due to the pain, clasp hands and shake, or shut their eyes and tense up. You may see their fist balled up.
3) Constant shifting in the bed. They can not seem to get comfortable because of the pain
4) Restlessness and agitation that can not be explained. As with number 3 it seems impossible for them to get comfortable and they become angry because it hurts. They may also guard the area of pain if it is localized so you can not touch it or they resist being moved because it hurts..
3) Moaning and/or groaning.
4)Combative with care. Think about it. You have someone who is very confused and they are hurting. You are going in to touch them or try to do care. They don't know who you are or what you are doing, all they know is that they hurt and you touching them hurts more. Worse, they can't SAY they hurt because they cannot articulate the sensation with words.
5) Elevated respirations/blood pressure/heart rate ALL indicate pain
In the late stages when Hospice is present, they need to treat the pain if there are any of the above symptoms. If that moan is accompanied by a calm relaxation then it is not pain. You can request that Mom not be transported to the hospital. I did this for Dad and have done it for Mom as well. They will have to present me with an overwhelming reason to transport her.
Lifts are only beneficial in certain situations when the patient can not help with transferring and they are too heavy to be lifted without hurting the care giver. The space should also be adequate for the lift to be used at all times. There are two kinds of lifts, a standing lift and a sling type lift. Each has it's upsides and downsides. I will say they are dangerous to use unless you have been taught the proper procedure. A better option is nothing more than a gait belt. It is a wide belt with a buckle that you use basically as a handle. It allows you more control over Mom while you are moving her. A physical therapist can show you how to use it in no time. Mom doesn't need to be able to stand up to help with transfer. There are techniques that can be used to safely transfer your Mom without a lift. Unless Mom is very heavy I would ask for a physical therapy consult to show the family how to do proper transfers instead of a lift.
Mom can be changed in bed as well. It is not necessary to take her to the bathroom unless she is still voiding in the toilet when she is taken. Again, a physical therapist can show you how to do this. While you are at it ask them how to change her linens by rolling her from one side to the other and changing half of the bed at a time.
Many don't know what question to ask. They assume that the professionals are giving them perfect advice. Nothing is perfect and they need to question what doesn't appear to be right. Sometimes they do need to get another opinion... and need to ask for that opinion. Hope this helped and bless you for trying to help this family
I think her moaning is just the latest stage that she has reached. The hospital didn't find anything and didn't expect to. She's being medicated to stop her combativeness but she is still fighting to some extent. However, the medication is necessary to keep her from harming herself and others. I do question why at this stage she is on namenda. I thought that was for early to mid stage ALZ.
I was reading up on these patient lifts and they always recommend two people to operate the unit. Obviously this thing is too large to fit in the bathroom which is the only place that she would be going. Again, this agency that is coming out said to get it. I'm not sure how they started coming. I've also been reading about hospice fraud and one has to wonder. I am sure for the most part that they are good and their work is awesome.
The caregiver from the agency is overweight herself and probably has a hard time getting MIL out of bed, but... if she is incapable of moving a patient then it's time for either better care or another caregiver. However, the family is not on board. I can only pass info and hope that some of it sticks, usually not though.
It's hard to see what stage she is in. The dr said that she was healthy as a horse. If your muscles stop working though and you can't find your mouth to eat, isn't that a decline? She is inclined only to eat ice cream and onion rings. Considering she has acid reflux and diverticulits I'm sure these don't help her medical conditions.
How long does this stage last? I have tried to get the family to get her things in order. It's bad enough they don't have a clue.
Anyways, thank you for your response. It is always helpful and I feel better understanding the process and the situation.
The moaning and combativeness are both signs of pain. I would love to see her face. If there is that little furrow between her brows, it is probably pain related. In the end of life there can be pain that is not necessarily related to a specific medical situation. It is the pain of the end of life. Do you have a clue what medication they are using to alleviate her combativeness? Roxanol perhaps or maybe Ativan. Ativan is strictly for anxiety where as Roxanol is for pain.
Yes, a lift does take two people to operate it safely. I am not sure what they were thinking... but the family does have a right to refuse especially if they deem it unsafe for their loved one.
Alzheimer's is a brain disease. The rest of the body can be healthy. My Mom has no other health problems. Her heart is strong, her lungs are clear, and the rest of her body is functioning as it should except for her brain. Eventually the brain will fail to tell the rest of the body what to do correctly. Mom has lost the ability to walk or feed herself. Her brain just doesn't tell her muscles what to do. She is having difficulty knowing what to do when the food gets in her mouth. Again, this is a brain function. She has long sense lost the ability to communicate or understand communication. This is also a brain function. So even though the heart, lungs, and other organs are healthy, the diseased brain is taking away her ability to live. That is why Mom can be healthy as a horse and still dying.
As for the eating, please tell the family to ask for "Magic Cups". They are 290 calories each with 11 grams of protein. They can also supplement with nutritional supplements such as Ensure or Boost. The onion rings just made me smile. It amazes me what they love and hang on to.
Hospice was probably recommended by her primary physician. They give care for patients who have an illness with a terminal prognosis. When they are at the point when comfort care is all that can be offered. I am SHOCKED that she is still on Namenda.... and Statin. I do wonder about this particular agency. Dad was with Hospice for the last 3 months of his life and Mom has been with Hospice for the last 19 months. Here they are amazing Hopefully they will give this family good guidance....
The have her on :
Seroquel 1/2 to one tablet depending.
Lorazepam 1/2 to 1 tablet at noon and bedtime
Exelon patch in morning
Namenda 1/2 table morning and night
Zoloft morning only
Bayer low dose morning
Benicar 1/2 tablet in morning
kefir and lactinex are referred to on a list
They did have her on ativan and I asked them to rethink that and I guess the above is the latest coctail. She does have diahrea alot but I think that is the namenda and her health issues, however she always thinks she's constipated. The drs have checked her and nothing wrong and her hemmorhoids aren't big enough to cause an issue. When she tries to put food in her mouth she misses her mouth. This is the most recent info that I have.
Lorazepam is the generic name for Ativan
Benicar is used for hypertension. It lowers the blood pressure.
Bayer low dose is a blood thinner.
Zoloft is an antidepressant
Seroquel is a multipurpose antipsychotic used for depression, bipolar, and mania
Exelon and Namenda are both used to slow the progression of dementia.
Kefir is a cultured, enzyme-rich food filled with friendly micro-organisms that help balance your “inner ecosystem.” More nutritious and therapeutic than yogurt, it supplies complete protein, essential minerals, and valuable B vitamins. It is said to help depression. It is an ancient naturalistic approach.
lactinex is a probiotic for better digestion.
Namenda could be the cause of the diarrhea. That is a side effect and one Dad had the entire time he was on the Namenda. But the Lactinex and Kefir should help that. She knows she should have a BM but she doesn't remember having them so she is sure she is constipated. I have seen that over and over and over. My Mom was the worst. She would have a BM, come into the next room, and swear she was constipated and not been in days.
If she misses her mouth when trying to feed herself then she has lost the small muscle coordination that it takes to feed herself. That is a direct result of the damage done to the brain by the dementia. It takes eye hand coordination and muscle control to get the food in the right place. It might be helpful to guide her hand when she is eating, or just feed her.
I am still surprised that she is under the care of Hospice and still taking both the Exelon and Namenda. When a dementia patient is in the late stages of the disease (indicated by Hospice involvement) then it is too late for either of these medications to do any good. So she is getting the side effects and no benefits. Many doctors prescribe these medications (along with Aricept), not because they are very effective, but because they are the only approved medications that they can prescribe. Perhaps a good question to ask, if Mom is in her late stages, moaning and in discomfort, why would you want to continue a medication designed only to slow the progression of the disease?
As for the Ativan, generic name Lorazepam, in the elderly this medication can have the opposite effect. Rather than calming them, it causes the very anxiety that you are trying to eliminate. Xanax is also in the same family. It's generic name is Alprazolam. Though these seem to be the "go to" medications for anxiety.... there are better anxiety medications for the elderly
Thanks for the info! I knew Ativan wasn't good but didn't know that Lorazepam was the same thing.
It was my husband's turn with her yesterday. She has declined rapidly. He says that she looks uncomfortable. She won't get out of the bed and doesn't want to be moved. When trying to feed her she puts her arm over her head. She isn't underweight so right now that isn't an issue. The doctor said that her skin is good and hasn't lost the healthy layer (never heard that). I asked my husband why he keeps mentioning how healthy she is, I said yes for someone her age that is good but the difference is the ALZ which affects the brain which controls the body. The caregiver even stayed with my husband because she said she was worried about MIL. Again, I've brought to question her meds and the stupid patient lift. Ughhh.
I guess we'll see what direction this takes in the next couple of weeks. It's a big learning curve.
Deb, I'm sorry to hear that your mom is doing worse. I know we all take it one day at a time and my prayers are with you.
Thank you Mitsy...I can use all the prayers. It is difficult to go through all there is to go through but there does come a point when you just wish for comfort... whatever that may be. Comfort for your loved one and for you.
You are very right about your MIL. My Mom is exceptionally healthy for a person in late stage dementia. She doesn't have any heart issues, diabetes, her liver and kidney function is good, her lungs are clear, her skin is intact... but she has advanced stage Alzheimer's. The disease is taking away her abilities bit by bit. It is a terminal disease. Hubby is mentioning how healthy his Mom is to try to deflect the ravages of this disease. It's a way to compensate for everything else he sees Probably a bit of denial there.
Skin condition can be a major concern and it is good that her skin is intact. The skin can thin to the point that it is easily torn, bruised, and that is when decubitus (bed sores) can develop. This are very hard to heal and extremely painful. When the skin become very thin it is known as onion skin. It doesn't take much to tear the skin away and you will see bruising from very little pressure.
Mom may not want to get up and it might be painful to move her. In the later stages rigidity is a problem. The muscles become rigid (stiff is what we call it) and moving does hurt. Remember those non-verbal signs of pain. If she is showing signs of pain the family may want to talk to the doctor about pain medication to make her comfortable. If it is just hubby thinking she looks uncomfortable, based on his standards, then Mom is probably ok. What we see is a function of our perception which may not be the loved ones reality.
Roxanol is the usual pain medication used by Hospice. It is liquid morphine sulfate. It is a good medication for pain control with minimal side effect. If they do begin the Roxanol please be aware that constipation is a major side effect!
Yep, one of the ladies in my support group will put her finger straight up in the air when anybody says "Learning curve" because that is how we learn. It's not even a curve but a soars straight up until it is over
Hang in there... you are doing good things and helping your hubby by learning all you can. You are his best advocate!
This is the first time I've heard rigidity in the ALZ blog. Now that you've said this, I'm sure this is what is happening. I will mention the pain meds.
My husband said that they want to use the patient lift to get her out of bed to keep her from getting bed sores. Even at one or two times a day, the remaining time is spent just laying there. They could move her in her bed?
It's not a good idea for her to be constipated. She tries to pick at her bottom to get the poop out. More to think about.....
Odd... using the lift is not what is needed to prevent bed sores. Simply turning her regularly is what is needed. Right side, left side, back... repeat... turning ever two to three hours. Watching the pressure points. Those are any places where the skin turns red when she lays one way for a while. Hip bones, small of the back, shoulders,heels... these are prime spots. If her skin is in tact and she is not underweight the changes of bed sores are greatly reduced. The lift is dangerous. You add in the risk of falls and injury from the lift and it's potential improper usage. The straps are not padded and not intended for extended use. Just lifting Mom and then putting her right back where she was is not sufficient. She needs position changes and that can be accomplished easier by just rolling her.
If they do get her up in a chair, you have to be careful of the lower back, coccyx (tailbone) area. If they sit her in a chair and then lay her on her back, that area is never pressure free and the number one spot that decubitus develop.
Does she have a hospital bed? Does it have a gel top or air mattress on it? If not these are better investments than a lift could ever be.
You may want to put her on a stool softening or even a laxative as needed. I do keep a BM log on Mom so there will never be any doubt as to how long it has been. If day three with no movement, you know to take more action. Mom did get Roxanol for a couple of days after her seizure which resulted in constipation but it was easily handled because we were aware of the possibility and had a plan in place.
She does have a hospital bed. Not sure on the bed topper.
Yeah, I think it's a bunch of yahoos caring for her that don't know any better. They're telling them after medicare pays so much then medicare buys it. Who cares! She doesn't need it. I told them all she needed was to be turned in the bed and her diaper changed and cleaned with regards to that issue.
Hubby says his mom is breathing with her mouth open and fast. What does that mean? I'm not sure what the drs are telling the family. Everytime I ask someone they say they don't know. If it were my family I'd surely know and make sure I know. Either way, don't know, guess ignorance is bliss (or to me just plain stupid) Husband is worried that she is nearing the end, but I can't honestly say that from reading everyone's post. I know it's hard on him and I am trying to be there for him. Thanks for all your support Deb.
Mitsy, that is shortness of breath. Similar to gasping. It is one of the indications that she is having difficulty breathing. It is called dyspnea. It feels as if you body is not getting enough oxygen. Eventually you may even hear noises when she breaths, called a rattle. This is called by secretions in her throat or throat muscles relaxing. Being on her side will help the rattle. Roxanol, which is given for pain, will also help the dyspnea.
The National Institute on Again has a booklet entitled "End of Life: Helping With Comfort and Care" You can do an online search. It is in PDF format and you can read it online or print it. It goes great information related to what to expect when approaching the end of life. From all that you say here... Mom may well be approaching this stage. Please tell him not to be afraid. He needs to embrace this time and spend quality time with his Mom. He needs to say what needs to be said and just be with her. Hospice should have a social worker assigned to your MIL's case. Your Husband needs to talk to this person about his feelings and what he can do.
Question, is there any color change in her hands or feet? Are her nail beds bluish?
I am at the same place with Mom that your husband is with his Mom. I have been through this with my Dad March. Yes, it can be frightening but one you embrace the reality, it can also be a blessing which will give closure to a live well lived.
I do hope you and your hubby will have a blessed Christmas.
Ok, so she's got the patient lift and everyone's smiling. MIL doesn't like being moved that much but now the caregiver can put her on the lift and then make her bed. Whatever... Today my husband said the smell of urine is SO STRONG, that they want to put in wood floors. I said that was a waste of time (sounds like his brother is fixing the house up for him). Urine will stink up the wood too. It's best to wait until she passes away and change the carpet because the brother's dog pees on the floor, etc. Yes, these people are gross. In the meantime, what can you do about the smell and the sheets? I don't think she's being changed enough but I'm not sure. Caregiver is spraying lysol which is not going to work. Anyways, suggestions from experience would greatly be appreciated!!
Concentrated urine has a distinctive odor that is very offensive. It might help if they hydrated her better. They also need to change her each time she wets and not let her stay in the wet diapers. Under pads will help keep the bed dry. If there is an under pad and she is changed frequently, there should not be wet sheets. Mom was in the bed for 6 days and her sheets were never wet! There is no way that urine should be on the floor!! My bet is that is the dog and not Mom... unless they are just letting her wet through the bed!
If Mom is not kept try they you run the risk of her developing decubitus (bedsores). Once she develops a decubitus it will be very very difficult to heal it.
As for changing the bed... it can be done without Mom being lifted. A good care giver should know how to roll the patient and change a bed with her in bed. It sounds to me like they do not have a very good care giver.
The family is saying that hospice made them get the patient lift. Hubby says that medicare is paying for it (so? doesn't make it right). Hospice comes everyday and gets her out of the bed and that's why they need it. It can't be for more than 10 minutes. She doesn't have the use of her legs any longer. I've asked my husband to try to get her to drink more water (not soda). He says she won't drink. He also says the caregiver is changing her alot, but I still wonder. Anyways, thank you in explaining the urine smell. Also, can't someone tell hospice that they don't need to come every day? Isn't that what the caregiver is to do, giver her her bath, etc? Just wondering on that one. Thanks!!!
I am trying to figure out why they are getting her out of bed every day for such a short period. Are they putting her in a chair? Are they changing her linens? What is the purpose of just lifting her into the air once a day?
Repositioning is important but it should be done after a few hours not after a day and can happen by rolling her from side to back to the other side. She can be changed and cleaned up, even the bed linens changed, without taking her out of bed. If they are getting Mom up in a chair once a day to enhance her circulation then that is one thing... but that takes about an hour or more.
Unless they are sitting her up in a chair for an hour or two during the day, I see absolutely no point in the lift. Changing her position from vertical to horizontal can help with circulation. But it does not sound like that is what they are doing (10 minutes is not enough).
Carbonated sodas are dehydrating! Not to mention that artificial sweeteners can cause bladder spasms which make her urinate more often. Your MIL is probably after the sweet taste. So you can find something she can drink that is not dehydrating. Try a sports drink that is not the sugar free kind. Give her fruit juices. Or try what I did which was to just add a packet of sugar and a slice of lemon to the water.
At least here I had the ability to request or refuse service of Hospice. I did it after discussion with the hospice nurse and/or social worker. Mom had weekly visits from a nurse and a care giver once a week to do her shower. Does your MIL have a care giver with her other than Hospice? It sounds like she does. So I would ask WHY Hospice is coming once a day at this point. The only time I had daily visits was the last 10 day... and that was for monitoring her medical condition. The full time care giver should be able to do anything that needs to be done. Unless... they are supposed to get her up in a chair for an hour or two a day and that is the reason Hospice is showing up daily and has to have the lift.
Husband says that hospice gives her a sponge bath every day. They get her on the lift and do it that way. Like you said, the caregiver should be doing this. Yes, she has a caregiver and then the dr ordered hospice. Dr. said she was physically all in good shape which means that hospice could be coming for two years or more?
She is at a stage where she isn't talking, just mumbling. She really doesn't feed herself, but she is now eating again since they lowered some of the medicines which just made her sleep. Each of her kids do just enough that no one can point the finger that they are heartless and aren't participating. Funny, when they get there they just count on getting out of there. The caregiver has even started coming when they are there since no one but her will change her diaper. The saga continues.....
How in the name of thunder do you give somebody a sponge bath in a lift!?!? A sit to stand lift is only used when a patient can stand up and assist with transfer. The other option is a sling/Hoyer lift and that covers just as much of the patient's back as laying on a bed. It is a continuous piece of fabric from her neck to the back of her knees. You have to roll the patient to get the web under the patient before you lift them so why not just roll the patient and wash the back? I could understand the lift to get her in a chair for an hour or so to enhance her circulation but not for a sponge bath! If anything, it makes it impossible to get to the back and buttock area.
Mom didn't talk for the last 3.5 years of her life. A few words here and there but nothing that connected to anything other than perhaps a visual stimulation. She stopped feeding herself over a year ago. Yes, if she is too heavily medicated she will sleep rather than eat. It is good that they have medication regulated to the point she will eat again.
As for diaper changes, not everybody can do that. Some because it is a parent and some because they are just squeamish. Not everybody can change a baby diaper and I don't hold that against them. But there are other things that those family members can do other than stop by and rush out. Some are just not comfortable with the sick and elderly. I find it very sad but that is not something we can change. It is their responsibility to make sure Mom get good care, not do it themselves. If necessary let the care giver they are paying change MIL but spend quality time with her
Yes, the saga always continues. Each deals with this disease in their own way and each case is different. We all just have to do the best we can!
The Following User Says Thank You to Gabriel For This Useful Post: mitsy (01-08-2013)