My mom with Lewy Body Dementia has been losing weight gradually and down to 89lbs. How long can she go on like this? - AgingCare.com

My mom with Lewy Body Dementia has been losing weight gradually and down to 89lbs. How long can she go on like this?

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Been on hospice 16mo! My mom came to live with me 18months ago. She has Lewy Body dementia with Parkinsons. She is quite mobile but has bad swallowing issues. She had a feeding tube for over a year but we had it removed because it was causing her pain and she was eating real well. Her appetite is quite good and she eats quite a bit. She actually did well after the tube was removed. Recently, her muscle mass has really decreased and she is real thin. Hospice says it is a natural part of aging.
I asked the hospice nurse how long she can live wasting away like that. She says people can go on quite a while like that. She said she had a patient that was only 67lbs and had to stay wrapped up in several blankets all the time to keep warm. She said she was so tiny she looked like a child. How awful! Mom has not gotten aspiration pneumonia despite her trouble swallowing and is not in too much pain.
On another note, she is unhappy and very difficult to deal with. She moved in my husband, daughter, and I 18months ago. She treats me horribly, doesn't appreciate anything, and treats me like her personal slave. She wants my undivided attention and I just am too busy. We own a farm with lots of animals and it is a lot of work.I don't know how much longer I can do this. But, if she is really dying, I don't want to send her to a home now. I will not be able to live with the guilt. But, she has been on hospice for 16months and keeps going up and down. Everyone swears she will outlive me as all this stress is affecting my health.
I know deep down it is time for the nursing home. But I think I can do this till January. If I send her to a home and she passes right away it is like the past 18mo was for nothing. What are your experiences with end stage of life and what do you think is happening?

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Well first all I can say everybody is different. How old is your mother. My mom has memory loss she still loves her food and shes 90. I been talking care of my mother for 5 yrs she needs 24 hr care cause she has memory loss she just has bad sun downers at night. other than that seems fine during the day. She is just very unhappy the way she is she got Valley fever went into "meningitis" they said its like now a dementia all I know is My moms memory was fine till Valley Fever got to her. Your mom seems she ok to me, cause if she still likes arguing and being mean seems to you very difficult to deal with ect.. Then she must be doing alright. My mother is all you said except she loves her food some times she don't feel like eating but then nether do I when I feel depressed or not happy my mothers not happy she never has been but she still try's to be she is on and off we all have those days. Some more than others. My mother used to say always look at someone else cause just remember there will always be someone worse off then you are then you will kiss yourself. One thing I know I had to put my mom in a nursing home NOT cause I wanted too but I had to she got a Urinary tract infection had to go to the hospital then they kept her for 5 days then she gets weak in her legs and can't walk so then she needs physical therapy Ir's hard for me to really take care of her when she can't walk. But I had done it before when she couldn't even walk because it was my choice i did not want her in a nursing home. And every time I do it's been Nursing home neglect. Now my mother is in ICU. Do not put your mother in a Nursing home if you love her she will for sure pass a way! My mothers been in 5 nursing homes and each one I had to pull her out and take her home with me they all just drugged them and her up they don't listen the Dr's just keep giving prescribing Meds My mother dos better without the Meds. it should only be taking when absolutely needed. And all I do is arguing with them. They don't run the nursing homes right. They should all be SHUT DOWN I have not found anyone that was good. They get money for what to kill elderly and shorten there lives More! I have to take my mother OUT and do what they couldn't do all myself as always. Now my mother is in ICU for 7 days! all cause of the nursing home my mom has NEVER NEVER been this bad she has Ammonia and a Real bad Urinary Tract Infection! Nursing Homes! Should be ALL SHUT DOWN. Now this is something I'm going to have to live with if something happens to my mom my life will never be the same. "I am pissed angry" that there are Humans that treat and can get away with treating older people like Animals and even animals shouldn't be treated like that!!! I'm not done with these nursing homes that messed up my mother yet!
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Nut - my mom too has Lewy. She is in a SNF/NH and in June went onto hospice due to a shattered hip from a fall. The past 4 months on hospice has been it's own adventure in itself. My mom is tiny, petite and maybe 110 lbs max in her youth. She is now mid 90's and weighs 82 lbs. She has a DNR and indications for no feeding tubes, peg lines or transfusions which she did well over a dz years ago.

In speaking with mom's hospice RN and hospice SW, the patients who are tiny to begin with (like my mom) can go for much longer on hospice. The gradual wasting away of the aging process is much less stressful for them and the body can easily adjust to loosing weight and muscle mass. If they are bedfast - like my mom is - being tiny actually increases their life as they do not get bedsores as easily and pressure points and comfort can be pretty well managed on the fluctuating air mattress the hospice has her on @ the NH. If they are big to begin, with the whole bedsore and hygiene issues are....well...more problematic. There is another lady at the NH who is similar to my mom (she has Lewy too) and she has been on hospice now 3 years and is maybe 70 lbs but she can still feed herself and hold a sippy cup. The ability to self-feed and drink seems to be the big determining factor in being in end of life stage. My mom needs some assistance in feeding but still asks for food (she is wanting sandwiches so she can hold them and feed herself....just amazing), so she is going nowhere just yet. LOL!

Now my expereince is that my mom is actually getting better care at her NH since she in on hospice. This NH (my mom's 2nd NH) seems to have their nursing staff work well with the hospice groups. Like the hospice aide comes in 5 days a week and 2 of those days the aide gets a CNA from the NH and they do a duo bathing team for my mom in the wet-room geri chair. She has never been cleaner.

Now I don't live in my mom's state, so her being in a NH is the best situation for her. I go in when I can and I'm a freelancer so when I go, it is for a several days stay & I usually go every evening to be there to help her with her dinner. In speaking with mom's roommate (80 yr old) and with family who are evening regulars, those who are on hospice get lots of service and extra's. Really for us, her being in the NH and on hospice has been better than when she was just in the NH as a regular resident. What the hospice has provided so far is: twice a week RN visit; 5 X a week aid visit (2 days bathing & 3 days at lunch so they help her eat); monthly SW and clergy visit. All this paid for by Medicare. Hospice had her old NH bed changed out to a more narrow air mattress bed - these are the kind that breathe and change on a regular cycle so that bedsores are kept at a minimum; extra things for nutrition like Boost and hygiene like daily terry bibs; she now has a geri-chair which is a specialized wheelchair she can be fitted into (with her shattered hip she cannot use a regular wheelchair); and a wet room geri-chair designed for bathing. All this stuff the hospice arranged for and bills to Medicare. The bill for June was right under 5K of which Medicare paid about $ 4,200.00.

You sound like you have run out of steam in caregiving. I think you are on the right track in wanting to move mom to a facility in January. I totally understand about wanting to wait through the holidays. That isn't what I would do but I understand why one would (I'm not sentimental). There are things you need to be doing now to make the transition to a NH easier. Speak with the hospice group you are with now to see which NH they are at. If they are the type that only do in-home hospice then you are going to need to find a NH with an active hospice ward and find a hospice group. There are 2 big hospice groups - VITAS & Compassus - you can also contact them to see which NH they are at., Then contact those NH to see if they have open beds. If mom is going to need to have Medicaid pay for the NH, then you need to start to get all that paperwork together for the application. The Medicaid application can be a real maddening mice maze to get through. So start now so that it too doesn't overwhelm you. The NH will give you a list of what is required for their review which is - in turn - submitted to the state caseworker by the NH with the NH bill.

Medicare will pay for hospice, but Medicare will NOT pay for the room & board part of her NH stay. That is what Medicaid will pay. Now some hospice have their own facilities. In my mom's city, VITAS has an old women's & children's hospital that is now their in-patient hospice; but admission to these type of units seem to be geared to cancer patients or major trauma patients who need pretty serious Class 3 or 4 drugs or those elderly who are really end of life. My mom would never be transferred to one of these as she can do quite well at the NH till the end.

Not all hospice are the same. The items my mom has from hospice are very expensive and a smaller hospice group may not have the credit lines available to
order and get these items rented or bought on the spot. They may have to submit a request and wait to get approved or paid then get the equipment to mom. When it's at home care, this sort of thing is not so important but is if they are in a NH.

Oh also hospice, since it is a Medicare benefit, can be determined as to who the provider is by the Medicare patient. So you as your mom;s DPOA & MPOA can determine if it is hospice # 1 or hospice group # 4. If the NH says all their residents only can use hospice # 2, then that is b.s. and I would look at other NH for mom to go into. Good luck and please remember to take some time for yourself. The leaves are changing right now, get out an take a walk and enjoy the fall weather.
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Big hug for you, I feel for you. I've worked in a dementia unit for 10 years and set up the behaviour support program there. I had a lady who followed me around endlessly and when I needed to go into other peoples rooms to assist them I had to literally push her to close the door and lock it behind me. She stay there and cry until I came out. One day a lady visited with a life like baby doll. I spotted it and wondered how this lady would go with it. So, I pretended it was real and just walked nearby her cradling it and talking to it. She put her arms out, and I gave it to her, she treated it as though it was her own. We bought a doll the same and a bassinet. It would keep her occupied for an hour or more at a time and gave me a break. They call it Doll Therapy. It might help. Look also at wht interests she had in her past, if you can dovert her attention. A video of her home where she grew up can be a good diversion or old photo albums of hers, DVDs of old movies, especisally her favourite singers. Did she enjoy cooking, gve her things to cut up. Hand her a pile of towels, tea towels, washers, etc to fold up. Take her for a long walk to tire her out (if its safe to do). If she liked to gerden set up a little garden in a wheelbarrow (it doesn't matter if she weeds it all out, cut lavender or some other easy growing herb in the neighbourhood and stick it in there, she can weed it out every day), sit her outside in the sun (if the area is secure) and give her finger food (easy to swallow softer type food that you can leave her with). Anything you can think of that will divert her attention and keep her engaged in an activity will give you a little space. Also have you taken her to see a Geriatrician, she may need to be on antidepressants or behaviour modifying medications can work wonders with behaviours and I once nursed a lady who cried all day every day, start singing every day and was happy. Medication is the last resort but when the carer is at breaking point, its an option that may be very helpful. High energy foods like chocolate and icecream will keep her energy up, and foods can now be fortified with protein and calcium (can't recall what its called) that is added into mashed potato, stews, etc. Milkshakes with an added egg is good. Whatever is her favourite. Supplements in between meals (in Australia we have Ensure and 2 Cal and Sustagen), not sure what you have there. Most importantly, you need to lool after you first. Do you have any community carers that can vist and at least assist with personal care for your mum, or housework. They can provide some respite care. Or book your Mum into respite care for a couple weeks. And when you do, don't visit for at leats a week...you need a break before she breaks you. Good luck and hang in there.
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Place your mom in a SNF...

She has dementia. She does not remember one minute to the next. She does not understand that you are helping her or not. She is not herself.

For some reason, people think that sending people to a SNF when they are demented is like killing Bambie. It is not. There come a point that the elderly demented patient gets worse care at home because it is such a horrible situation to the caregivers that the tension in the room is so thick that a knife cannot cut it.

The truth be told, people who get placed in a good facility thrive. They do not want to go home for Christmas, Easter,,,etc. The facility becomes their world where they feel safe and cared for.

In a way, keeping them in your own home is giving them a disservice as you are doing it not for their good, rather so that you do not get a guilty conscious from society's expectations of you.

Yes, if there is an elderly patient with their faculties and they just can't get along at home by themselves but are in actuality themselves only weaker, it is wonderful to take care of them in your home.

But if they are so crazy that they are obnoxious and through the disease process has lost the ability to have empathy and compassion for others, especially their caregivers, they are not going to be hurt that they are placed. They will feel more secure. Better to have them mad at you for giving them a better life than for them thinking that the daily care you kill yourself doing is subpar.

Good luck! You are going to need it.
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Very very helpful suggestions/advise. Wow! I've got some work to do, but its better than staring at the ceiling saying, "What the hell am I gonna do"! I feel like I have an instruction manual made just for me and my situation, written by people who totally understand the questions I need to answer and want me to not feel guilty about thinking about myself a little. Thank you all!!!
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I saw another answer suggesting talking to someone. Your local hospice center might be able to talk to you or help you find someone with the right experience, even if your mom isn't a patient there. I know from experience that talking to counsellors without the right background can make things worse.
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I don't have any end of life experience. All of my caretake-ees are busy planning to live forever :-) I did have a friend die of cancer in hospice though.

I have lots of experience with caregiver stress. Here are some questions that might help you reassess your situation.
** Did you consider that "until January" covers two major and stressful holidays?
If she wants all your attention now, how hard will it be to deal with her demands during the holiday rush when you have even more demands on your time? Will her presence in your home help or hinder the rest of your family's lives?
** Was she mean and super-demanding before she came to live with you? Do you know if it was a physical condition that changed her, like dementia or an infection? Consider that she could get even worse as she nears her end. I know from experience that the most and unpleasant recent memories can submerge all the old, positive ones. Are you prepared for this to be the way you remember her? Is this the way you want your family to remember her?
** If you think you can handle this until January, what will happen in January if she still needs care?
** If keeping her in your home until the end is important to you, can you hire caregivers to help? Most are trained for that sort of behavior and have coping strategies you may not have. Also, it's not their mom, so it's not so personal to them. I know in home care is expensive, but it's saved my life so far.
** Your friends tell you you're going to die first? Get yourself some help, woman, before you start to wish it were true! You can only do so much and you still have a family and animals to care for.
** My friend in hospice was very mean to the people around her when she was living at home and became bedridden. She went to a live in hospice center and became more at peace with herself and others. The environment was all about preparing for a peaceful death, not watching other people go about their lives while you die. Also, the staff there was able to cater to her every demand without so much emotion and physical toil. I can't say for sure why she was happier, but she was.

Good luck to you. Life sucks sometime and you just have to find a way through that leaves you whole at the end. I'm still working on that part of it myself.
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When a loved one with dementia (and sometimes without as well) is in the end of life period and eating very little, he or she can live longer than you might think. However, my post is actually directed to those whose LOs are in the early stages of dementia. Likely most of you are not anything like my sisters or another woman's (She lived in my mom's retirement complex) family - who worried about the person eating too much and eating too many sweets in particular. When we went out to dinner, my sisters watched Mother like a hawk and pushed food away from her or took her plate away. The other woman's family instructed the caregiver to take the woman from the dining room before she could have dessert! I wanted to tell them - and my sisters - that by the end stages, a person will likely lose a great deal of weight. When Mother died, she was skin and bones!
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Is there a senior center, church or volunteer organization in your area that could send someone over for a few hours one or two days a week? Help may be available that you don't know about. Some elderly people become more child-like as they age, unfortunately. My grandmother passed away at 95 after being forcibly removed from a quasi-assisted living location to an assisted living facility. After being moved, she fell, went into a nursing home and never left. 6 months later she was gone. She did not want to move to begin with and it was the beginning of the end. She quit eating, lost weight, became more and more senile and then passed away. I don't know how old your mom is, how tall she is, or what her normal weight was, but I'd say she may not last much longer at 89 lbs. My grandmother also mistreated my mother who took care of her to a degree. Like a child, my grandmother wanted attention and did what it took to get it. It's just how the aging process seems to work for some people. Remember how she was before she was ill and that she most likely wouldn't be saying the things she does if she were in her "right" mind. With my grandmother, I found that she could be very manipulative. She'd say no one called her or came to see her but when I called her on it knowing that someone had visited or called, she'd say she must have forgotten. In any event, you almost have to go forward like they are 5-year olds and not take comments and behavior personally. Would you be satisfied with the care you are providing? If so, then you are doing the best you can and as long as you are satisfied with what you are doing, be happy. Not everyone has someone like you who is willing to try to make the last few months/years of their life tolerable. Your mother is probably not happy about how she ended up, does not want to die, does not want to live, does not feel ok about being taken care of, etc.; she takes it out on you because she can. After she's gone, I don't think you'll look back and regret having cared for her. That we all had someone like you there for us. You are to be commended. You are not alone. Hang in there!
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My son passed away from Melanoma. Hospice told us that once a person stops eating completely, it could take anywhere from one week to a month. It took him about a month, but he was 25 yrs. old. I am sorry for your hurt. May God bless you.
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