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In-Home Care: Can Hospice Services Help Dad Care for Mom?
Morning, I'm still working on options to help my father take care of my mother who has Alzheimer's and chronic pain issues at home. Dad's resistant to in-home care even as he watches my mother decline faster and faster. I've been fortunate to find someone to advise and guide me. She told me that one of her friends whose mother had similar problems was enrolled in Home Hospice and that even though I've never hear of it, she said you can enter HH 2 years prior to death. That way, Medicare pays for everything and would manage Mom's pain medications, do personal care, counsel Dad, etc. Dad would still have to fill in any gaps with private caregivers. I've only ever heard of people in hospice maybe 6 months prior to death. The woman whose mother was in HH did not have to go into a nursing home at all. Anyone hear of this? Blessings, Linda...
Yep, It is a new program for Hospice. Check it out if you qualify. And hoping you get more good news today! Hugs
long-distance care-giver, right? [I went to check your bio to make sure, but nothing there yet. If you would like to, you can fill in a little about yourself so we can get to know you better!] Do they give you pointers on how to get Dad to let them in the door? Are you there with them now? sorry- lots of questions. ♥
Have tried to get my husband on hospice/palliative care two times now and have been told that under our plan he is not qualified because his nutrition is OK. His blood protein is OK. It would seem that the main qualifications for our plan is what the blood work shows. I have thought of looking into other hospice/palliative care options. I do think that this program would really help him. I have tried other things but daycares don't want him because of his catheter and now he is so far along - it has all just been one big frustration. Hospice/palliative care seems so sensible, better than what has been going on I would think, so why is it so hard to get in? Our insurance plan will pay for up to one year. I realize that with dementia patients things can go on and on, then maybe there needs to be some type of dementia palliative care set up.
After I posted, I did some research and found a good article about Alz. and Home Hospice. The regulations are very specific and the person pretty much has to be in bad shape. They have to be in Stage 7, too.
http://www.ec-online.net/knowledge/articles/hospiceknox.html
I said something to my husband about wishing there was something designed just for dementia cases and he said that the insurance companies (Medicare/Medicare Advantage) would go out of business with all the aging baby boomers.
Clancy, you said "Our insurance plan will pay for up to one year." Are you referring to home hospice? Do you have a Medicare Advantage policy?
Thanks all. Linda...(off to fill out my profile info).
Yes, they would pay for home hospice/palliative care. I was told that under palliative care we continue to pay for meds and equipment but we would have the support of a social worker and be followed by a palliative care doctor who would continue into the hospice phase. I don't understand why the palliative care aspect would cost medicare any more than what they are paying when you consider all the cardiology, urology, pulmonology, neurology, psychiatry, etc. appointments we go to now. Seems to me they would be saving money. We do have a medicare supplement, well it is actually just a continuance of paying for the medical care coverage I had at my work before I retired to take care of my husband. So, it is very good coverage and costs us 400.00 a month for each of us plus the medicare. No wonder we are going under. I am thinking the gate keepers are our medical plan who don't want to lose what we bring into the mix. Getting cynical.
While we are not dealing with Hospice for Alz, we are for COPD. They have been A+!! Not knowing anything about Hospice, we were a little apprehensive in the beginning. Seemed too good to be true.
My MIL was referred by her pulmonologist to her palliative care physician. After discussion of her problems by the pulm and pall care doctors, review of her med records (both of which were done before our appointment), one appointment and an exam by pall care dr, he referred her to the Hospice program immediately. We chose Visiting Nurse And Hospice (which is a non-profit organization). By that very afternoon they called us to schedule a meeting to discuss her needs. They (care worker and nurse) came to MIL's IL apartment to visit and determine what her needs are. Scheduled 3 visits per week by the nurse, 3 visits per week by a care worker, visit by chaplain and physical therapist. All at mom's convenience. They asked what MIL needed as far as equipment, etc. (anything: wheelchair, shower seat, walker, etc.) Equipment was there the next day. They handle oxygen and medication orders. They sort meds for the week. So far they have been fantastic and no charge to us for any of their services or equipment.
While there is no time limit to their care of MIL, it is determined by pall care dr that her health will not improve and she is able to do very little on her own. So far, FIL with Alz has not qualified for Hospice, so I do not know what the requirements for that are. Best of luck to you on this journey.
so great to know that is out there! ♥
You were lucky. Doctors have referred my husband but the hospice/palliative care gatekeepers in our plan said no because his blood protein levels are OK. Oh well, glad it is working for you. I have heard it can be a big help.
Ummmm......how does one determine at what point "2 years prior to death" actually occurs??
With our plan it all has to do with the blood work. Nutrition looks good and he is eating. Not very functional, but he does eat. So, that is the way our plan works. Like I said earlier, I think there needs to be some rethinking of palliative care for dementia patients. When it is necessary for cancer patients is different than when it is needed for dementia patients. My opinion after 6 years of taking care of my husband who has probably had dementia for a good 10 years or more.
Marianna, I've seen articles that say that the end stage lasts about 2 years.
Which is the reason why palliative care for dementia/Alzheimer's patients needs to be examined.
2bluwings: As an old Hospice care volunteer, I recommend that you call Visiting Nurses/Hospice in your Mom's locale & ask them directly for advice & assistance. If they cannot handle it, ask if they have some other suggestions for you. Call the local Social Work Dept., Alzheimer's Assoc Help Line, & read what Caring.com has to say about in-home care. I believe you can find the help you need but only in their local area.
And thank you for filling in your profile! You'll find a lot of us will read it now.
When money got tight for non-profit org,s some years ago, Hospice joined Visiting Nurses in most areas & their rules changed. I don't think within 2 years of death would necessarily apply many places. But you must find out what the local orgs do. Hugs. Grandma Piver
Thanks, Linda (2bluwings), for turning to this wonderful group for suggestions in care for your mom (and thanks to all who shared info and ideas). Here are some resources on Caring.com that may likewise be helpful...
You can learn more about hospice (including info about choosing hospice under Medicare) and how to find local providers here: http://www.caring.com/local/hospices
Piver suggested Visiting Nurses. You'll find contact info for this type of provider, such as the Visiting Nurse Service of New York, here: http://www.caring.com/local/in-home-care or http://www.caring.com/local/home-health-agencies
Here are some strategies for discussing these care options with your dad: http://www.caring.com/articles/how-to-get-your-loved-one-to-accept-an-elder-companion
You can also discuss this as an option for him to take a much-needed or occasional break from caregiving: http://www.caring.com/articles/respite-care
This difficult behaviors guidance may also be helpful to you (particularly slide 12: resists help): http://www.caring.com/slideshows/resists-help More tips like this are available in the Difficult Conversations solution center: http://www.caring.com/difficult-conversations
Please do let us know if we can be of any further assistance to you and your family.
Thank you so much for all the links above. It's given me some great ideas. I'll be bringing in a caregiver for my parents to meet next Tues. I'll let you know how it goes. Linda...
Through the help of my husband's cardiologist we now have an appointment with a palliative care doctor under our insurance plan. It will be on August 21st so not for a while, but we are both happy for the intervention that the cardiologist did for us and wonder why it was so difficult to have this happen. What a relief.
I am so happy for you ClancyD that someone helped you and yes the whole system seems to need some overhaul towards dementia and ALZ patients. I think as more Baby boomers come to this stage something will have to be done. It was a nightmare for us trying to get hospice to be able to take over control of mom's care when she was dying. Do to the Drs involved she went from Hospice to Visiting nurses then two days later the visiting nurses called the dr and we had to wait a week for him to be available to talk to Visiting Nurses as their was nothing more they could do for Mom and knew she needed Hospice. Once I finally pleaded with the DRS Head nurse about MOM and her needs and the need for Hospice she Finally sat the young DR down and had him order in Hospice. Mom was failing so fast that when they came rushing in they were behind in getting medications ordered and morphene pumps By this time she was almost comatose and was two days later when the morphene pump arrived during one of the worst storms ever and then we had a 18 hr blackout and it was freezing out. But the Hospice nurse stayed with us til we could get the generators going and restored heat and minimum of lights. We had to rewire so that her room was on full lights and the heat was mostly used for her room and the refrig for her meds. She passed a week and a half later. I cannot recommend Hospice enough however they have to follow protocal and with so much red tape and drs orders I just pray others can get help faster than we were able to.
Sorry for the rant but This is one area that needs to be changed and quickly!
Sorry is not necessary. I understand the frustration. It is such a nightmare getting the care that is needed. I do think the system will change because it has to as we baby boomers overwhelm the already overwhelmed system. But, comfort is so necessary at this point we need a more rational system. Thank you for letting me know you understand and care. I am still dealing with my husband's son who does not feel this is necessary. But, he is not the one taking care of him and watching this process daily. I just want to keep him calm and comfortable. Last night at 2:30 he fell. He is constantly getting up at night and wandering the house. Fortunately he fell on the carpet and not the tile and was not injured other than an abrasion on his forehead and nose. But, there will be a next time. Unfortunately, the appointment is not until August 21. But, at least we have gotten an appointment with palliative care and someone listened.
Clancy, would you be able to invite the son over for a weekend "visit" while you leave the house on long "errands"? Errands like getting a massage or a mani/pedi or just sitting at the library to read a book. Anything that would put the burden of care on the son long enough that he could begin to grasp the issue.
I have thought of that. I don't know. But, I have thought of asking him to be here, spend the night with him so I could go and get a good nights sleep. I might try. My husband is now up much of the night. He used to sleep a lot, now he is up a lot. I don't get that. Not sure how to handle it, for one thing I am not getting sleep. I have tried keeping him up but he is still up wandering the house at night even when he has been up a lot during the day. He just seems lost and can't be content with anything. I am getting to the point where I am going to ask his son to stay the night with him so I can get some sleep. Thanks.
Just do it, honey you need some sleep and if he can watch him for you, it never hurts to ask! Or plead or whine or cry. LOL that always works best for me. Just get some sleep or you will be too sick and exhausted to help DH any longer yourself. So don't wait just do it.
Clancy, you are describing my DH. Getting him up more during the day you would think would mean he needs more sleep at night. But this is dementia and their emotions seem to come into play so strongly. Tonight DH was very needy, Could not sit still, wanted someone to listen to him for longer than either son or I could. He kept asking how he would leave, when he would go home. Really worried. Talking about when he would leave as if he meant dying. I was sympathetic, understanding, but unable to comfort him. Finally he ate very little supper, went in our room & went to bed. Wore himself out. I will probably be up with him @ midnight, 2 AM or 4 AM. So I had better get to bed myself now. 9 PM.
You cannot do this job all by yourself, Clancy. You really do need to get some help. Do get his son involved, staying the night. Hugs, Piver
As the Nike commercial says, "JUST DO IT"
Good advice here - you DO need to take care of you, because if you don't, who will???? Hugs!!!! ♥
Clancy, I posted this on a different thread, but especially for you, I'm posting here. I found this test on a web site for a Utah Caregivers pamphlet. It's a caregiver stress test. Just copy the link and paste to your browser.
http://www.caregivers.utah.gov/caregiver_stress_test.htm
Caring.com also has a caregiver burnout or stress quiz: http://www.caring.com/articles/caregiver-burnout-quiz This solution center also offers strategies for caregivers: http://www.caring.com/caregiver-stress Information about falls and dementia is here: http://www.caring.com/falls-and-dementia I hope these resources are helpful! Please do let us know if more suggestions are needed. Thanks!
Caring for a Parent: Mom Won’t Bathe. What to Do?
I am not sure what to do with my Mom's bathing situation. She doesn't want to bathe at all. She tells me she has already done it, I know she hasn't, or she is too tired to do it. It has now been a week and 1/2. I am so disgusted. I have tried everything being nice, being mean, being flat out nasty about it. She doesn't care and says she is not going to do it. What do I do?
Mom plays with my Grandson's toys. Boats, cups, colored water, fishing pole etc. Devin is really into science so he has a lot of "test tubes" and water projects to perform his "science". These seem to really interest Mom also. Devin is 5 years old. Maybe try some toys. Lord help us.
I don't know the answer to this one either. I have the same problem. I also have a problem getting her to use the lotion the doctor prescribed for her itching problems. Any help would be appreciated. I know some angels just set everything up and take their loved one into the bathroom. That doesn't work for me.
We have lotion parties Su. Music and all. We run around the living room and do the lotion dance. Good things the neighbors are aware that they live next to some crazy people. Good luck.
Commiserating - Mom was doing the same with me it was like I was lying to her when I would tell her she needed a bath. So I got a calendar & put it up on her wall next to her bedroom door. When she takes a bath I mark it & when she needs to take another & gives me an issue over it I just point to the calendar where I have marked in shocking pink a big S - so far so good. For the itching Dr tried all kinds of things also for her picking - now he has her on a mild dose of xanax & it wks but as the dose wears off she will start but then she gets her next dose & quits. I still catch her rubbing but not itching & picking. My issue now w/Mom is she is back to trying to give the cats table food which they cannot tolerate & I just got through cleaning up a pile of throw up - I have caught her twice & it is so funny how she tries to hide what she is doing like a kid that took a piece of candy from the store & got caught & denies to the hilt! She had the cat on the chair farthest from viewsite & when I come in kitchen to ck on her the guilty look flashes across her face so I ask her what she is doing - she says just eating my breakfast. So I step away & move just out of her viewsite - whalla, I catch her bending down a bit & reaching under the table so I go & look under table & find cat w/a piece of bacon on the chair. I ask Mom about it & she first says she doesn't know how he got that then she says there is nothing there. So now I am taking the cats & putting them in my room while she eats her breakfast - she is upset & this makes me wonder how can she remember this & not knowing she needs a bath.
So if you have a small bowl of dry cat food next to Mom's food, whould she feed them that? A couple of chunks consumed by Mom won't hurt her. My Son ate dog food until he was three or four. Not that I liked it, but he was "sharing" like a good boy. Poor Seth!!!
Yes, I have tried giving her a lil bowl of cf for the cats but she still would drop a bite of human food on the floor for one of the cats to eat. Oh my the things I tried - you know the drill us caregivers go through trying to get the result we need from our loved one. I let the cats out after she went back to her room after breakfast but she was still mumbling that she doesn't like being treated like a child. I don't know where she got feeding table food to the cats from the table, I can remember as a kid that doing that to any of our pets was totally unacceptable, couldn't even have the cats anywhere near the table - my Mom would take the newspaper after em if they tried to come into kitchen or dining room. Really makes me wonder how the threads of their brains wk w/ALZ.
Have you given mom a newspaper? Maybe that will trigger something. Put the cats out before you feed her. No, put Mom outside and feed her there!!! Just kidden.
No she only gets her paper on Sunday now - that use to be an issue too, she had to have that paper, I use to say she was a paper addict but we lost our paper boy except on Sun & now she doesn't know what day it is & will read that Sun paper over & over & when I go to town & get our local paper she will read that over & over like she just got it. Cats can't go outside, Mom can't go outside either & I am laughing thinking about the pic that gave me of Mom being put out on the back steps to eat!! Putting the cats in my room worked she was miffed but oh well!!
Hi db87, Thanks for asking this question, and thanks to all who provided practical suggestions! Here are some more strategies you can try...
Hope these suggestions help!
Alzheimer’s Care: Will My Father-in-Law Need to Go to a Nursing Home?
I've heard that my FIL with ahlzheimers will be dangerous with my toddler and also that his condition will mean that he will have to go into a nursing home eventually. How true are these statements in your opinion? It's hard to believe of the gentle man I see now.
Nutsin: not always true. In US I have read, 70 % of dementia patients die at home. If you see no problems with the situation now & you & DH can handle his needs & take care of your marriage & toddler too, then it doesn't sound as if he needs a NH now & it is cheaper & easier to keep him with you.
Can you leave him alone? If not, do arrange for respite care. I strongly suggest you & DH should have a date at least once a week - doesn't have to be anything more than a walk in the park together, but do spend time as a couple away from others.
Dementia can go on for many years. The changes come gradually.
Hi Nutsinbrig and welcome ♥ It is hard to say what will happen in the future but if your FIL is not aggressive or angry now I cant see why he would be a danger to your child....who made that statement? Did they mean that he would cause the child harm or that he could not be trusted to look after him/her ? As far as Nursing homes go,I look after my 86-year old husband who is now entering the severe stage and he is still at home with me---which means Im on duty 24/7....it is far from an easy job but I have decided to see this to the end with him--at home.Many people choose to place their loved one in a NH,it`s really up to the individual caregiver/family.Nothing is written in stone ♥
The wise Piver has spoken! No two cases are exactly alike, so generalities are just that. I don't know that I would leave your toddler in your FIL's care, but you know your FIL best. This is one you will have to judge for yourself. There is much to be gained, on both sides, by interaction between the generations. Good luck and hugs! ♥
My mother is 93 1/2. While I certainly would not leave her alone with a toddler, when she is around my grandchildren she's like a whole different person. She loves to touch them and hold them and talk with them. Her face softens when children are around. Even ones she isn't related to. Whoever told you that must have had a bad experience. However, please remember that this disease DOES change our loved ones. Just because he's gentle now doesn't mean that he will definitely always stay that way. Be alert for changes and notify his doctor if you begin seeing any hostility. There is medication that can take the edge off of their emotions.
Regarding the nursing home. NOT NECESSARILY. As long as I can take care of my mother I will do so. When I can no longer care for her alone, we will have someone come here to the house to assist me or to take over caring for her, but she will always be here at the house. When we remodeled I had the outlets on either side of her bed put on separate,dedicated circuits so that if we ever had to bring in medical equipment there would not be an overload. All the doorways and passages in the house were widened to a minimum of 36" and her bathroom is larger than some peoples bedrooms in case she is ever in a wheelchair. The only feature of the house that will have to be ccorrected is changing her shower to one that doesn't have a "lip" on the front edge so that she could be rolled into it. Thankfully, she's phenomenally healthy and still is able to walk without any assistance.
Mariana, we did the same with remodeling. Our bathroom is so big I do all sorts of things in it - it's my favorite room. I'm a child at heart & like to splash water & we have a slanted floor to a drain in the middle.
Nutsin, I don't think that's always true - - my mom is amazingly sweet with my goddaughter who is almost 2yrs old. She gets happier when she's around, looking to see what she's up to all the time. Definitely monitor the interaction, but you would know best!
Nutsin, every situation is differant but all I have seen with my DH and little ones he seems differant in a good way. He tries to make them laugh by making funny faces at them. By all means don't leave your FIL alone to take care of the toddler. Hugs
Nothing I can add here. The angels have done a fantastic job with their input. All I can do is welcome you nutsinbrig!
Tizzy
Welcome to Our Family of OWA's (one winged angels) Nutsinbrig, I'd like to suggest that you read all you can find on Alzhiemers Disease ~ Knowledge is Power !!! There is a book that many of us have read and recommend called : Learning How to Speak Alzhiemer's by Joanne Koenig Coste....Caring.com also has many many articles, there is "alzheimersreadingroom.com". The Alzheimer's Association that has a newsletter that you can subscribe to, as well as many informative articles that you'll find helpful. I don't believe that your FIL would be "dangerous" to your toddler unless of course he was left alone to care for the child, which I'm sure you are not considering. AD can cause some behavioral changes in some people but like the saying goes: Once you've seen one person with alzheimer's, you've seen one person with alzheimer's. There are no two people alike. Everyone progresses at different rates. Some get some symptoms of the disease where other's get many. Some have behavioral changes, personality changes etc..etc.. Read, Read, Read and please keep coming back and ask as many questions as you need and want to, there is always someone here to help. We're all walking through this journey and are here to help each other. God Bless You & Yours ♥
Thank you all for your suggestions and your advice. No, I would never leave my toddler alone with my FIL. He is 87 and hard of hearing. Not a great babysitter! I will pass on a lot of this to my DH as well.
Hi Nutsin. No I would not leave my DH with small children, not because he would hurt them but because he cannot even take care of himself. He loves sm.kids, it is almost embarrasing because in the store he will talk to each and every one. About NH, I believe keeping a loved one as long as possible is the best thing. Hugs
Thanks. By DH I meant my husband :)
There are so many misconceptions about Alzheimer,s disease n the general population. I,ve found it quite common to have people talk past my husband once they know he has the disease, as if he,s no longer an individual. When in truth if you were,nt aware he suffers with it on most days sharing a ten minute casual conversation with him would give no indication. Another is that people become aggressive even violent which isn,t always the case either. I never encountered it during the eight years of caring for my Mom or in my husband since his dx. a few years ago. They shared a kind, patient nature, for which i give thanks on a regular basis, and f or anyone with an interest in horoscopes they were both cancers their birthdays two days apart. To add to what Piver said, my husband and I kept a constant vigil during her last three days at home in her own bed. This disease brings enough heartbreak without having to anticipate something that may never become a reality. Just love them for who the person they are and take it one day at a time. Try not to dwell on future hardships anymore than necessary it drags you down and makes your day to day much more difficult. I,ve lived through many debilitating depressions and know from which I speak. HUGS AND PRAYERS TO ALL MY UPLIFTING FRIENDS, silent squirrley
glad you weren't silent today - great post! come back more often! ♥
right on, squirrel - - that makes me so irritated - i usually will talk directly to my mom infront of a person who does that - see how they like it!!!
Thanks, Nutsinbrig, for raising these questions in the group, and thanks to all who offered info and suggestions! Here are some resources on this website that can also help you in considering your options...
While caring for loved ones with Alzheimer's or dementia at home, it's important for you to take breaks or 'self care'. Here are 8 ways to get occasional or regular backup help for a few hours, a few days, or longer: http://www.caring.com/articles/respite-care
The Alzheimer's Solution Center (linked from the Health A-Z tab at the top of Caring.com pages) includes a wide range of information about the stages of this disease, what to expect, and how to care for and comfort your loved one: http://www.caring.com/alzheimers
When the time comes, here is some guidance for explaining grandpa's condition to your child: http://www.caring.com/articles/explain-alzheimers-to-children
Should your father-in-law's brain deterioration lead to challenging behaviors, such as aggression, here is information to help you understand and respond to the behavior: http://www.caring.com/alzheimers-behavior-problems
If the family decides that long-term professional care is the best option for your father-in-law, this directory of local resources can assist you in finding the right service provider for his needs: http://www.caring.com/local/alzheimers-care-facilities The directory includes ratings and review from other family caregivers, seniors and consumers. For those on this thread who have had experience with a professional senior care provider, please do add your feedback about their services to help others in the search: http://bit.ly/RateSrCare[bit.ly]
I hope these suggestions are helpful to you and your husband.
Caregiver Support: Two Words for this Care -- Love and Acceptance
Hi, everyone! The importance of good friends can't be priced and neither can this site. I feel so fortunate to have friends who have stepped in to help pack up and move Mom's things from her other home which is now on the market. I've already packed up valuables from her home two hours away and have slowly been incorporating items in her home here, where we both live. (On Friday, when I have a caregiver) This "sneaking around" is the only way as she has been unable to be alone safely for well over a year now and doesn't yet know she isn't controlling everything any more. I Mom-napped her last September, but she believes she goes to her other home every weekend. ???? Her neurologist gave me a prescription for xanax for her in case of emergencies...like the dentist. Sometimes I wish I could really know what she is thinking and going through. So glad you are all here!
Well done to you, that all sounds very positive, and definitely worth the thought and effort you have put into doing what is best for your Mom. I'm glad you have kind friends, you deserve them. Hugs to you. Gertraud.
@ doingtherightthing: God Bless you for loving your mom enough to take care of her. Glad you have some nice friends to help also. I take care of my husband and have some wonderful kids to help us. It is such a blessing. I miss what my husband once was but he is still wonderful and thoughtful. Gives me problems with taking his pills but does. A week or so ago he said he is getting worse and something is happening in his brain. He asked if I will stay with him to take care of him. Of course I assured him I would.
gr8grma and dointherightthing, two words have stayed uppermost in my mind since joining this site, and they are "love" and "acceptance".....both of which apply to the wonderful care you give to your loved ones. I think it was reading the book that our dear BJGarry wrote, that helped me to realise the importance of those words! :) Gertraud.
Gertraud, thank you for your comment. That makes the years of effort worthwhile to share my mom's story to help others know the power of love & acceptance with ALZ.
God love you all, BJ
Love and Acceptance. My life has been so much easier since I learned those two words. My husband is in the difficult stage where he knows soething is wrong and the doctor has talked to him but of course by the time we get home he has forgotten it. But as difficult as it gets I still Love him and miss what we had. 50 years next month so the Lord has blessed us and with his help we will prevail.
doingtherightthing, I am jealous, for you are so far ahead of me. I nagged pop last December for doc said he couldn't safely live at home with part time caregiver. Well, pop, here I come, get ready. Ha. Well every day dad longs for his home, wants to drive, etc. CRAZY IS THIS WORLD. I need to move his entire furniture for storage and hopefully get another home perhaps to place his things in it and lease his home. We lost 2 offers to others. I am a little depressed, yet wasn't meant to be I guess. Good job. I am so proud of you. I am giving myself till Dec. to move his stuff, get agent and rent his home. Yet I work also and have little vacation to do this in.
It is tough to find the right way to handle each individule. Since it is my husband I didn't have to move anything. They don't like change because they don't understand things. After my husband lost a kidney a couple of months ago we stayed at my daughter's for a week with our son also staying there to help with my husband. It took a lot of work after surgery. When it was time to come home he didn't remember where we lived until he got in the house then he recognized everything. One morning he got up and said he didn't think he was in the right house but soon was ok again. Is your dad alone when you go to work? I can't leave my husband alone anymore. Have to have someone here with him. I live out on 10 acres in the middle of the desert. So far he has not wanted to wander and that is helpful but I worry about him brooding when alone. He doesn't have a clue about time. A half hour can seem like a long time to him. The best to you and God Bless for the wonderful job of taking care of your dad.
sdbutterfly. Good job and congratulations on your 50th. Our 50th was great as my husband was still good. We were married at 17 and have now been married 58 years. I to miss the man he once was. He could fix anything but now can't do anything. Luckily I have a very good family that can help repair things for me. It is like having a child again but I still do love him too. Keep up the good work and God Bless You.
gr8grma, I am lucky that my husband who timely quit his job 11/2 years ago and them pop was progressing in his disease. Hubby is with dad or if he's busy my adult son can watch dad or I could request my adult daughter. I am very fortunate to have no one really working yet they can help with pop. I work nights so I am home during day, sleeping. Dad hasn't wandered yet, but he's slowing down, sleeping more, doesn't want physical therapy, wants to go to his home, yet he doesn't understand his capabilities. God bless you with you hubby. Tears are shed with the funny times with dad.LOVE AND ACCEPTANCE, GREAT WORDS sbutterfly. I had a little teary spell the other day while I was driving around by myself, listening to my music about poor dad and his progression. Love and accept at any stage, he's family, my blood. Love you pop.
You are blessed to have such a wonderful family as I am too. It makes it so much easier to get through the hard times. God bless all of you.
Caring for a Spouse: How to Get Him Ready for Bed without Resistance?
I thought I was a good caregiver, but it seems to get harder each week as my husband's Alzheimers gets worse. He was diagnoised over two years ago, but the last 3 weeks I have seen him getting a lot worse. The last few days he has refused to put his PJ's on to go to bed. He is now setting up on the couch in the living room asleep. Does anyone have a suggestion as to how I can get him into his PJ's and into bed? He does real good through the daytime and seems to become more confussed of an evening.
Cheetah, it sounds like your husband might have Sundowner's Syndrome. It's a nasty beast. They get very agitated and fearful, sometimes violent from their upside down time confusion.
My mom had this, but was better at night and horrible in the morning. She would always ask, "Why am I still here?" as if disappointed each morning to wake and find herself in the same confused place.
She asked me to write a book about her journey with Alzheimer's to help others & their caregivers. It's called Alzheimer's Stage-by-Stage Care Guides by BJ Garry. Available for iPad, Kindle, Nook. In it, other caregivers offered these ideas for coping with the nighttime drama: turn down the lights, put on soothing music, share a up of tea, anything to get him to recognize nightfall means PJ's and bed.
Good Luck to you. And remember, you ARE a good caregiver, then and now. Asking for help from others is a good thing. BJ
cheetah cat1, Choose your battles. Is it okay if you let him sleep on the couch by offering a pillow and blanket if he gets tired and give him that kind of control over his life. I suspect some times he will gradually get back in bed. Dad will sometimes fall asleep with his day clothes on in his bed. I don't make a fuss and give him his choice. Most of the time he's in his pjs. Don't sweat the little things and you need to conserve your energy for bigger things that may come up. Just a thought,lol, latte.
Thanks to all that have responded, you have been a big help. I guess I was making a mountain out of a molehill. I will keep praying that I have the strength to handle the situations ahead of me.
Cheetah~Some thing you can try-I did this with my Sam~~go to Walmart and get PJ's that look like sweats ,your DH can even were them during the day-I had some regular sweats for DR. visits and etc. as they are so easy to get on and off . Letting him sleep anywhere he wants ,is not a good idea- as he needs to be watched and you have to sleep,too !!``keep on leading him back to his bed,something else --maybe the Doc.will give you a med.for your guy at night time. Good Luck. !!
OLG
{ Our ,BJBARRY is so right about Sundowner's -Her book is great because it is in retrospect~a true lovely journey ,The 36 Hour Day -is good ,too--but only stick to the parts that you are dealing with }
I second your comments re- BJBarry's book oldladygolfer, and I shall refer to it time and time again, as my friend continues her Alzheimer's journey. My thoughts are with you Cheetah1cat, and I hope you manage to resolve the bedtime issue. I wish you all the best. Take care. Gertraud.
Luckily dad doesn't wander. Yet you can place locks on doors high enough or place portable alarm system with main console in your room that my neighbor got at a hardware store. Its like a baby monitor, kind of neat and I will use this idea if needed. Good luck Cheetah. I do agree with the above and consistency is so important yet as long as he is safe, I forgo the arguments and choose wisely what to be firm about.
I'm having the same problem with my husband wanting to keep his daytime clothes on at bedtime. This is when I am most careful to keep my tone and facial expression friendly, no matter how stressed I feel (smiling actually eases the stress). I once told him, okay, go on and get in bed and enjoy your sleep. He walked to the side of the bed and realized his shoes were on and said he had to take them off first. It also helps to remind him that his shirt and pants will get wrinkled and linty if he sleeps in them. I also tell him his hat will get crumpled and eyeglasses broken. So far that helps a lot.
Christean, BY GEORGE I THINK YOU HAVE IT. Great response. I am sure you are very witty and spontaneous. May we all learn from your wisdom. Such cute replies. You indeed GO WITH THE FLOW. FANTASTIC.Bless you and yours.
Hafa Cheetah1cat, I agree with anonymous, Pick your battles, the ones you can win or at least not lose too badly. If he wants to sleep on the sofa, give him the pillow, a blanket, and turn up the TV. When he is ready, he will go to bed and your sanity will be preserved for the next crisis. Stumper
Hi Cheetah1cat, Thanks for turning to this wonderful group of caregivers for ideas and support! And thanks to all who responded with suggestions! Here are some additional resources on Caring.com that you may likewise find helpful...
What to do when a loved one shows signs of sundown syndrome: http://www.caring.com/articles/sundown-syndrome Tips for other challenging behaviors that can occur as the disease progresses: http://www.caring.com/alzheimers-behavior-problems
The Alzheimer's Solution Center (linked from the Health A-Z tab at the top of Caring.com pages) also includes a wide range of information about the stages of this disease, what to expect, and how to care for and comfort your loved one: http://www.caring.com/alzheimers
While caring for loved ones with Alzheimer's or dementia at home, it's also important for you to take breaks or 'self care'. Here are 8 ways to get occasional or regular backup help for a few hours, a few days, or longer: http://www.caring.com/articles/respite-care
A family caregiver in West Virginia suggests using bedtime tunes, which she discovered helped in the care of her grandmother: http://www.caring.com/blogs/tip-of-the-week/bedtime-tunes Music is also being used to soothe nursing home residents living with Alzheimer's or dementia: http://www.caring.com/blogs/fyi-daily/the-wow-power-of-music-for-people-with-alzheimers
Please do let us know if we can be of any further assistance to you in caring for your husband.
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