Signs of Approaching Death with Dementia

Hi Joan, I am sorry to hear your mom is approaching death. Yes, it is so sad and hard to be part of this life changing experience. Use this time to be close, talk with her even if she can’t respond. Tell her how much she means to you and how much you love her. Make this time special between the two of you. My thoughts and blessings are with you. Barbara

My mom is 69 has had dementia since 2015 I think. Or at least that’s when I strated noticing a difference. My mom is now talking to the people in the magazines and introduced me to the magazines. She has really started talking to herself it freaks me out what does this mean??

My beautiful mother is paralysed from the waist down with a cavity the size of a mandarin!poor circulation and a heart problem.Soon no antibiotics will respond ,as she battles for her next whim of air.
Time is nigh my love x

Hi Vicky, I am sorry to say, from what you have written, it sounds like your Nan will not get better. It seems she has indeed entered the dying process. How long? No one can really say although if she continues to not take in enough calories or fluids her body will shut down. Have you read my booklet How Do I Know You? It will give you some guidance on approaching death for a person that has dementia. You will also find some guidance in the booklets Gone From My Sight and The Eleventh Hour. Blessings! Barbara

Hi Barbara

My nan was diagnosed with dementia 4 years ago, the last 6 weeks have been the worst we have been though my was hospitalised the second week in September and Is still in to this date she has deteriorated So much in these last 6 week very angry shouting out lots and just very agitated on a daily basis she used to love her food and had a really sweet tooth the first few weeks in hospital she was eatting everything and going through packets of chocolate, but the last week or 2 she refusing food and fluid she and her mobility is very poor to the point she scared to try and walk we was informed by the nurse that she is on the last stages of dementia and we have been told that she is deteriorating Fast she’s going into a dementia nursing care home In a week or two I’m just wondering if she’s she at that stage now or will she get better

Hi Margaret, in response to your comments about your father and vascular dementia: I can’t answer. My joke is "if someone can get better, I’m not the nurse for you. If you are dying, I’m the nurse you want at your bedside.”. Based on what you have written it doesn’t sound like your father has entered the dying process. It sounds like a hydration/kidney issue (but again what do I know). I do know I would consult your father’s doctor and ask for more information, more tests. If you don’t think you are getting adequate answers get a second opinion, or a third, until you are satisfied that all has been explored. If I can be of help use my personal email barbara@bkbooks.com. My blessings to you and your father. Barbara

Hi Barbara. My wonderful Dad was diagnosed with a UTI Sept 30, entered hospital and received antibiotics then released to care facility to gain strength to come home. Unfortunately, he began to hallucinate and talk gibberish seemingly overnight. They assessed him and diagnosed him with vascular dementia. One thing I noticed was, when he was hydrated through an i.v., he talked normally but when taken off, he reverts to the in/and/out state of gibberish and clarity. The weird thing is it just changes overnight. He has been in a care facility now for over 3 weeks. He eats well, looks well, numbers are good but goes ‘in’ and ‘out’. My question to you is -is this normal for vascular dementia , the sudden change. It just seems so dramatic. I’m feeling like we’re missing something. Thanks for any enlightenment you may share!

Hi Christina, it is hard form me to tell “what will happen next” without more information but here are my thoughts: if he becomes agitated over putting fluids or medicine in his mouth, then don’t. I don’t think a bit of water is worth his agitation. I wonder why he is receiving 5ML of Morphine? Has pain been part of his disease? If not, why is he getting liquid morphine? If not for pain maybe as a relaxant and does he really need that? Ask your hospice nurse why he is getting morphine and does he really need it. I have a booklet Gone From My Sight which will be very helpful in guiding you through this experience and to know what to expect next. How Do I Know You is another booklet and it addresses end of life issues for persons with dementia. Ask you hospice if they have the booklets. If they don’t go to this website and order them. My blessings are with you and your family. What good grandchildren you are to support and help your family. This is a time of togetherness and love and it sounds like that is just what you all are doing. Barbara

My grandfather has dementia from a stroke in 2016. He has refused to get out of bed or even eat these last few days. one day he was still sitting up in his chair and the next this. We have him at home and all of us take turns staying there with my grandmother. Hospice comes too. When we try to give him water with a sponge, he gets very aggravated and says no! he is given morphine 5ml by mouth and that is hard for us to administer. He is already weighing 80 lbs. I don’t know what to expect next.

Hi Andrew, WOW! with all of those meds she certainly seems over medicated and many of them (let alone in combination) will create sleeping, doziness, confusion, and mobility challenges. I am glad you have brought in hospice and certainly agree that 90% of the medications you listed can be discontinued. Can you insist that your mother keep her doctor that is familiar with her rather than the “house” doctor? If not, maybe she can be under the care of the hospice medical director instead of the facility physician or PA. I did this with my mother and had our hospice medical director take care of her. Different facilities and states have different protocols so don’t know about your state. You are being a good advocate for your mom. Unfortunately with medical care the way it is today someone looking out for our best interests is a must. Good Job. If I can be of any help use my personal email barbara@bkbooks.com. Blessings to you, your mom and family. Barbara

My mom is in a memory unity. Like the staff and everything. However…she has declined rapidly in last 4 weeks.
I’m upset and I believe she has been overmedicated. She is 83, and moved into this great place in December. She was outgoing and was a delight to the staff, got everyone out of their rooms to enjoy activities. So since September:
Aleve PM Caplet 5:00 PM
Aspirin 81mg Chewable 8:00 AM
Certa vite SR w/LUT Tab 9:00 AM
Divalproex SOD (Depakote) 125mg 9:00 AM
Divalproex SOD (Depakote) 125mg 9:00 PM
Donepezil HCL 10mg 5:00 PM
Gabapentin 300mg 8:00 AM
Gabapentin 300mg 5:00 PM
Hydrocodone-Acetamin 5-325mg 8:00 AM
Hydrocodone-Acetamin 5-325mg 1:00 PM
Hydrocodone-Acetamin 5-325mg 5:00 PM
Hydrocodone-Acetamin 5-325mg 9:00 PM
Lisinopril 2.5mg 8:00 AM
Lorazepam IC:Ativan .5mg 9:00 AM
Lorazepam IC:Ativan .5mg 9:00 PM
Melatonin 5mg 9:00 PM
Myrbetriq ER 25mg 9:00 AM
Naproxen 500mg 8:00 AM
Omeprazole DR 40mg 8:00 AM
Simvastatin 40mg 5:00 PM

She went from no walker , to a walker, and then fell 3 times. I think the Hydrocodone given for complaints about hip pain…made her immobile. When I found out about all the meds…I told staff I would become an expert. They immediately 1/2 the Hyrocodone. She seemed more alert, but still sleeps a TON. I’m not sure if staff wants her to sleep, but she is sleeping all the time it seems.
Now we have hospice care coming in next week to help with her. They recommended taking her of 90% of the meds. I believe she will yo yo back to “mom”. Just not sure how to evaluate proper care. My nephew is not happy saying they are overmedicating, but has no idea due to no visit in 2 years. People can decline, but I do think he is correct in some sense. We switched her normal physician to the facility, but only to find the actual doctor has never actually seen her. Seems Nurse practitioner are the only means for the doctor.

Any advice? There is a lot more to the story. Maybe she truly is in decline…maybe I’m feeling guilt. Just don’t know.

Hi Jonathan, Thank you for giving me such a detailed description of your father’s illness and disease progression. From what you have outlined it appears to me that he has entered the dying process which is associated with months before death. I do not think he is in “Labor” which relates to weeks. Have you read my booklet “Gone From My Sight”? It gives guidelines to look for. In your father’s case it appears he is dying from MS not the dementia. It also seems that his care at home is becoming just too challenging. With his dementia he may not understand why he isn’t at home but your mother and you can visit each day. It is important to take care of yourself so you can love him through this experience. My blessings are with you and your family. If I can be of further assistant use my personal email barbara@bkbooks.com Barbara

Hello Barbara,

My father was diagnosed with Dementia in June of this year. He also suffers with slow progressive Multiple Sclerosis which meant that his mobility has deteriorated over the years. He has just turned 80.

Over the last year he has had a number of admissions to hospital following falls at home. I am an only child and have regularly been called to help my mother at their house in order to help my dad when he has had a fall. This has been ok but I started to notice that, with each fall, it was getting increasingly challenging to handle him and get him back to his armchair. On a few occasions we could not manage it and had to call the paramedics for support. My dad is only a light weight but trying to get him back to his feet was becoming increasingly challenging.

In June of this year I noticed that his MS and ability to walk, even with his frame, was becoming increasingly difficult. I also noticed that he was even struggling to pick up a cup to drink tea. He became very quiet and conversation became less and less. Dad and I are very close so it became more pronounced when he was not communicating as much and smiling less; so unlike my dad.

The diagnosis was given later that month. At this time his speech was slurred significantly, he can only give one word answers etc, his behaviour has changed (He is sometimes more abrupt etc) This is so unlike him. My dad was the kindest, gentlest man you could ever wish to meet.

After a long spell in hospital, mum and I took it upon ourselves to have the downstairs office converted to a bedroom with an en-suite. Getting dad upstairs on a chair lift was now impossible. We also used a hoist to move him into the lounge so that he could have as normal a life as possible. He was able to be home for his 80th birthday which was great. At this time carers were coming in AM and PM in order to get him in and out of bed etc. My dad was at home for 1 month and things seemed ok, however, he developed a UTI infection, usually associated with MS so had to be admitted to hospital. We were told that he should only be in for a couple of days, however, it ended up being nearly 3 weeks. During this time I have seen his Dementia deteriorate. Speech is less and he seems to be in a trance when his eyes are open; not all of the time but for a significant amount. He is currently being looked after in a nursing home. He was here after his initial release from hospital in June for 4 weeks. He is well known and well liked by the staff. They have also said that his dementia has deteriorated since his last visit only 2 months ago.

He is now in his second week back in the care home. He is having constant pain from his MS because of recurring spasms for which he is being given morpheme. This does ease the pain slightly and makes it more comfortable for him. Unfortunately he has to lie in bed all day as he is unable to sit upright in a chair because of his MS which is now severe. He has become more distant; his appetite is not particularly good even though he is still eating and drinking a little. He does respond to conversation and does seem to know what I am saying to him, however, his responses are very brief, often slurred and make little sense.

I love my dad dearly but really fear he is slowly slipping away. I would like him to return home but this seems almost impossible now. Based on all of the above do you think he is entering the dying stage or could he still be around for a good while longer; maybe months or possibly years?

If you could let me know Barbara I would really appreciate it.

Many thanks for your help and for taking the time to read this.

Warm regards

Jonathan Blower

Hi Molly, I so agree that we just don’t know what a person understands, perceives, and comprehends behind the “mask” of dementia. I encourage speaking and interacting as if they can understand. What do we have to lose? Nothing if they don’t and a lot if they do. It never hurts to say “I love you”, to tell someone the news of the family day, and about your comings and goings. My blessings are with you and your family. Thank you for sharing this important concept. Barbara

My mom has Dementia.She is 81.I think she can understand everything coming to her ,she just cannot respond with language as well,like her brain is a transister that has dead batteries,she is behind this transister i believe as aware of everything as before,just not i tellectually conected but she is still contected in other ways,emotionally,spiritually,intuitively,biologically to relatives.Also her personality is intact.She is not only her brain function,i wish more people would relize this,like my relatives,just because her memory an language ability is undiminished does nott mean she is not comprehending stuff aroun d her,Her eyes show understanding and responding emotionally to what is goin on around her,she still listens intently to others.

Hi Jennifer, from what you are telling me about your mother in law it does appear she has entered the dying process and is probably days to weeks from death. Yes, do prepare for her passing. I am wondering why she is receiving morphine every hour. You did not mention a reason for her to be experiencing physical pain. Even though she doesn’t know you and is non responsive talk with her as if she understands. Tell her how you love her, what she meant to you when she was well. Wish her well on her journey, say goodbye. If I can be of help use my personal email barbara@bkbooks.com. My blessings are with you, your mother in law and your family. Barbara

My mother enlaw is 82 she has had Alzheimer’s for over 10 years she has been in a nursing home for 5 years. We visit 3 days a week. She doesn’t know who we are anymore. And a week ago her bp dropped to 70/40 she has never had bp problems doesn’t even take meds for it but she is no longer eating nor drinking her eyes are half open she is sleeping non stop she is taking morphine every hour. How much longer can she live do we need to start preparing ourselves for her passing? Looking for answers 😢

Hi Lisa, what a great daughter you are, basically putting your own life on hold while you cared for your mother and now your father. To be unappreciated adds to the challenge. Here are my thoughts: at 93 you never know what can suddenly turn into a life threatening situation. From what you have told me he does not sound like he is actively dying but he could have entered the dying process which is months—I just don’t know. I suggest you take him to the doctor for a complete physical to see if anything is amiss. What I do know is that often we reach a point, when caring for elderly parents and/or sick parents, that we have to step beyond their wishes and move them to assisted living or a nursing home. No one wants to live in either one of those places but sometimes care goes beyond the home unless you can afford (which most of us can’t) full time help. You have an obligation to take care of yourself as well as taking take of your father. If you can’t continue with his care then he will have to move anyway. I know this is hard to hear. We want to care for our parents, to be the “good” daughter or son but sometimes it just isn’t possible anymore. I think that is where you are now with your father. I think you are beyond the place of “do you want” and are at “this is what has to happen”.
If I can be of anymore assistance use my personal email barbara@bkbooks.com. My blessings are with you, your brother and father. Barbara

My father is 93 and my brother and i care for him..I am 55 and moved back to my parents house, 4 years ago to care for my dying mom….whom was on hospice for 11 months…before she left this life….and then i remained in my/parents home to care for my father…..He and my mom sere married 57 years….my father John was / is extremely healthy except for his ""legal blindness " macular degeneration….I would take care of my mom a hundred times again if i had the chance….but myvdad is a different story…he is an angry man…he NEVER thinks that he is wrong…..and we butt HEADS every day…so the past 5 months he is most definitely failing in looks, appetite, depression…sleeping all day ..etc….and he is virtually miserable….I don’t know what to do….he doesn’t want to go to a nursing home, let alone a assisted living facility….i dont know what the esrly signs of dying are…I have googled soooooo many things…..so every time I ask a few questions about my dad…..it responded as if i am asking about a dying person on hospice…..I am trying to find out if a seemingly healthy man of 93 can all the sudden die….and what are the signs ??? If anyone has the same situation…please respond..thanks

Dear Vai, I just don’t have enough medical information to say what is happening with your father. I will say at his age, having had a stroke, a feeding tube, and sleeping all the time, not being able to awaken him, it sounds to me as if he is indeed dying. The feeding tube is giving him nourishment and keeping him hydrated so he may become congested. Keep changing his position from side to side so his skin doesn’t break down, keep his bottom clean and dry, his mouth moist, and love him. Talk with him as if he can hear you, hold his hand and just spend time with him. This is not a time to try other medical interventions to fix him. You want to make him a No Code if he is back in the hospital or a nursing home. My blessings are with you and your family. If you have further questions use my personal email barbara@bkbooks.com. Barbara

My dad is 90 yrs old, he was at the hospital and he had stroke.. he couldnt eat so they use a tube to feed him..about a week or less at home..he slept all day for almost 4 days now…No waking up..Can you help me out..I need to know

Hi Michele, it does sound like your aunt’s condition is deteriorating HOWEVER dementia doesn’t play by the rules so we just can’t be sure what is happening. Sleeping isn’t a gauge just not eating. If she doesn’t take in enough calories to keep her body functioning she will continue to deteriorate. Offer her food but don’t force it is the best way you can care for her. This is a challenging time. My blessings are with you and your family. Barbara

my aunt is in a n. home for 3yrswith dementia she is slowly not eating i have to feed her and the staff does whem im not thereand when she does eat its like a big chore for her too eat you can see it on the look on here face too also she lately has been sleeping alot especially in her wheelchair and she dosent get up until after lunch i think she is really slowly going down what do you think??????

Hi Kat, from what you are telling me it does not seem that she had entered the dying process. Dementia just doesn’t play by any rules. Except the the reduced eating all the other things she is doing could simply go on for a long time as part of how her dementia is manifesting. How little she eats is the only clue you will really have as to whether she has entered the dying process. You might want to read How Do I Know You for guidance. Blessings! Barbara

Hi Wanita, based on what you have told me, yes, it appears your grandpa has entered the dying process. It does not mean he is dying tomorrow but it does seems that his body is shutting down. Your hospice nurse can give you more details as to a time line. Also read my booklet Gone From My Sight for directions. My blessings to you and your grandfather. Barbara

Hi Barbara

My grandpa has a stroke for 22 years now, he is now 84 for the pass four days now he has not been eating or drinking a hospice nurse told us he also has pneumonia and also diagnosed with diabetes and dementia, very concerned about him is he approaching death
Thanks

My Mother-in-Law has lived with my husband and me for almost 16 months following her husband’s death. We are her only caregivers. She has dementia, what I think is end stage based on what I have read. She is in a wheelchair and incontinent. She started showing signs of dementia at least 5yrs ago. In the last month or so, she has drastically reduced the amount she is willing to eat. She is unwilling to keep her head up and does not seem to comprehend what we ask her to do. We ask her to do one thing, she then does another, claiming we said something else. She periodically is seeing people in her room who are not there. She periodically wakes up multiple times during the night, even though she is on a double dose of prescription sleep medication. We are at our wit’s end. By way of this short background (there is much more), we are trying to determine if she is indeed at end stage. I am hoping you can shed some light. Thank you so much.

Oh Beverly, yes, I believe based on what you have told me that your mom has entered the dying process. Being 90 years old, having had the stroke, withdrawing, sleeping and not eating all suggest to me that is what is happening. What can you do about it? Not eating: you said she has a peg tube so that tells me she is being feed through her stomach. She doesn’t really need to eat if she is being fed artificially. Offer her sips of water if her mouth is dry but really she is getting nutrition and hydrated while she is receiving the peg tub feedings. Withdrawal: Your mom is preparing to leave this world. Her connection to this world is thinning. Think of it as she is building her place in the other world. What to do: love her, continue to be there. It isn’t about interacting with her but being there. Hold her hand, smooth her hair. It isn’t about words. It is a challenging time being with someone you love when they are leaving this world. You might check out my booklets for guidance. You can also email me personally at barbara@bkbooks.com with further questions. My blessings are with you, your step dad and your mom. Barbara

My Mom just turned 90 August 11, and had a massive stroke on Thanksgiving of 2015. Doctors said she would probably not live through the night and to prepare. We were devastated to say the least, however, she did make it (Thank God) and was eating when I walked in the next morning! she has though however declined dramatically over these three years and most particularly the last few weeks and my stepdad (they have been married 50 years) is there by her side every single day. I go there at least 3 to 4 times a week to support my stepdad (a wonderful devoted man) as she is in a full care facility, she has no left sided mobility, and only has been eating puried food, but is also on a peg tube to sustain her, she now doesn’t eat much food at all. She does have stroke induced dementia, and in the beginning she knew everyone, but now it is not so. She does know my Dad and me, because we are there more I believe, however most everyone that does not go very often, she doesn’t always recognize. My Dad knows something is not right and has become so frightened as she is sleeping now most times, and sometime we cannot even get her to open her eyes or to even wake up. She may even take bites of food without opening her eyes. (very scary for me, so afraid she will choke). There is no conversation anymore, it is mostly one word comments, and because of the stroke her speech is impaired, and now sometimes inaudible. It is hard for me to explain to my Dad her sleeping so much more is part of the process but he doesn’t understand. He doesn’t want to give her up. He desperately tries to wake her, but most times he is unsuccessful. I have tried on occasion myself. Every now and again we will ask her something and she answers with one word, but doesn’t open her eyes. Every now and again she will open them, but not for long. The have stopped her anti-anxiety meds to see if that would warrant a change, but he really hasn’t. She still just wants to sleep, and sometimes says she is tired. I too am heartbroken because I realize she will not be here forever. I have 2 brothers but they are not there as much. She spends all her time bedbound, sleeps most of the time. Do you think this is part of the end process? Do you think we should (or my Dad, because he believes if she eats she will be stronger) should push her to eat, especially when her eyes are closed? I tell him it is dangerous she could choke but he most times will insist that the CNA’s feed her anyway. I know his thoughts are good, but what would you suggest at this point? If she does eat anything, it is very small portions, and eyes most times are closed. I just don’t want her to go choking. I love my Mom dearly, I just don’t want anything unnecessary to happen with her to cause suffering. It has been 3 years now, and never been through something like this but can you give me your thoughts on the process. Thank you

Hi Donna, thank you for commenting on my blog. You gave our husband a loving gift by being his caregiver and keeping him at home. I’m sure your daughter just didn’t know that IVs were not in his best interest. Most people just don’t understand the process of dying normally and comfortably. Know that as difficult as it was watching him not eat or drink for those 7 days he was doing what is normal. He was not in discomfort because of lack of food or water. Blessings! Barbara

My husband passed away in April 2018 , he had lewy body dementia. He went 7 days without food and water. It was the hardest thing I have ever done in my life. Watching him slowly fade away. My granddaughter got mad at me for not putting him in the hospital for ivs. He was at home with hospice where he was comfortable and well taken care of. I was the only caregiver. I stayed by his side til the end.

Hi Jean, I am not surprise by 10 days with no food or water. The key is how much extra fat and fluid the body had before the person stopped eating and drinking. Three days is generally too soon to expect death unless the person was super thin and dehydrated to begin with. Yes, it is difficult to watch. Just think of a little chicken working hard to break out of its shell. Your sister is working very hard to get out of her body. She is in labor and labor is harder on us the watchers than on the person working to free herself from her body.
My blessings are with you, your sister and your family during this time. Barbara

My sister with Lewy Body dementia is on day 10, with no water or food.
So hard to watch.
She is on Hospice and could have had water and food, but she won’t eat and puts her hand over her mouth when you offer her water. Anyway she was at day 6.
She is sleeping in what looks comfortable, but just still clinging to life.
I’ve read and read, and even the Dr. said 3 days with no water and she would die. He can’t believe shes is still alive.
Hardest thing I’ve ever witnessed.

Hi Donna, based on what you have written it does appear your mother-in-law has entered the dying process. It could be many weeks or not, hard to tell without knowing more medical information. If you can take off work for an indefinite time without serious repercussions, yes, now would be the time. If you take time off and have a limited amount of time then you have a decision challenge. It does not appear to me that she has begun “labor” (1 -3 weeks). Ask hospice what they think. Have you read my booklets Gone From My Sight and How Do I Know You? They will be helpful in determining a time line. My blessings are with you and your family. Barbara

Hi Kevin, yes, it is hard to think someone we know and love could be dying soon. This is a challenging part of life that most of us will face one day. Love him now. Spend time with him. Even with his dementia and not knowing how much he comprehends know some part of him receives and knows of the love and devotion you are giving. My blessings are with you both. Barbara

Hi. My husband and I care for my mother in law. She will be 79 in October. About 2 years ago she was diagnosed with dimentia after she has a mild stroke. We had home heath come in for about a year and they helped with nursing and bathing. Both of us work full time but opposite schedules. In April she got a sick to her stomach and then dehydrated and spent a few days in the hospital for kidney failure she got much weaker and her dimentia increased. She was sent to a rehab nursing home for therapy. While in there was overmedicated and she did nothing but yell all day and night and couldn’t do anything for herself And finally one day her blood pressure became so low that she was sent to the emergency room. Spent a few days there and we took her home again with the help of home care. She started doing better but still needed help to the bathroom. And spent all her time in her favorite easy chair. But she ate and drank fine and used a walker or wheel chair to use the restroom. We also have another helper mon-Friday while I’m at work. About 2-weeks ago she basically stopped eating And then her legs became weak she would just drop so we had hospice help with a bed and potty chair. She is still not eating but she can swallow her pills. We give her ensure in sips. Is all she will take and won’t take more than a teaspoon or two of broth or baby foods when we feed her she sips water but has become unable to hold a cup and she seems dehydrated. If we move her legs a little to clean her she yells in pain. But still follows simple directions and has become in continent
I’m almost convinced she has entered the dying process. But hospice has told me much. And her decline is very rapid.
I’m trying to decide if I should take a leave of absence from work

I believe my father is dying he has no desire to drink or eat. He recently had a heart attack, but which is not everything he also has dementia, which is getting worse. Forgive me if this does not make sense, I am having a hard time to believe he will die very soon.

I believe my father is dying no desire to eat or drink.

I have been caring for my mother who is now 97 for 4 years with Alzheimers. She still walks pretty good, i bring her out to the malls shopping, out for lunch and even to the beach. I will in NO WAY put her in a nursing home. She is 24/7 care but i refuse to have her go to a nursing home and just be another body in a bed and cared for by someone doing their 9-5 job. She wears pull up and i shower her daily and dress her, shes always clean. My husband and I also care for my brother who is 59 with downe syndrome and alzheimers also. My mother looks at me with so much love and still kisses me and says I love you to me. I will care for her until the end. My heart will be sad, but my heart will also know that i did everything with her and for her till the end. I wouldnt have it any other way.

Hi Trisha, boy, I don’t know about your mother-in-law’s reaction. Dementia in any of its many forms is so puzzling. There are just no concrete guidelines to help us understand what is happening. It does not sound like she has entered the dying process. My initial thought is maybe her body responded to the cortisone reducing the inflammation and somehow cleared her brain for a bit. Doesn’t make sense really but think this is one of those times you will just never know what really happened. You had a bit of a gift to see her before she slipped back into the shell that holds a terrible disease. My blessings are with you and your family. Barbara

My mother in law has some form of dementia or Alzheimer disease. She has not walked in the last 2 1/2 years. She cannot hear. For the last 6 months she has increasingly gone downhill. She sleeps all the time, don’t know who you are, does not talk much, has to have help feeding herself. Don’t know what to with fork or spoon. Cannot lift her arms. She was moaning a lot , and every time she moved in wheelchair or we moved her legs, she just cried out. We had the Dr to give her cortisone shots in both knees. 2 days later, she talks our heads off, fed herself, knows whobwe are, calls us by name and says shes readyto go home. and kept trying to get up to the point of almost standing. This was so strange to us. The next day, she was back lethargic. Don’t know us, cant feed herself. Is this normal . She is 99 years old in a rest home. I didn’t know if it was like the end of life stage?

Dear Shirley, living with someone with dementia is certainly challenging as you know. Based on what you have described I do not think your husband has entered the dying process. It isn’t until he is not eating enough calories to maintain his body that the actual signs of approaching death become noticeable (when a person has dementia without another life threatening illness). As long as he is eating well the dementia will continue to progress but he will not enter the dying process. For someone without dementia the signs of approaching death are noticeable 2 to 4 months before actual death occurs. With dementia it isn’t until the person is not eating, due to difficulty swallowing or choking, that death can be seen as weeks away.
Shirley, be sure to take care of yourself, get rest, take breaks, find someone to talk with. Contact the Alzheimers Association in your area for guidance an. You need support during this time. Blessings! Barbara

For the past 18 months or so, I’ve watched my husband of 51 years behavior decline. The doctor diagnosed has as “questionable dementia” . First he had frequent outburst of anger. Then confusion and memory declination of events. However, .he doesn’t forget people. He eats well and drinks a lot of diet sodas. What stage is he most likely?

Lieven, your parent’s “busy with work” isn’t reason enough for you to put your entire life on hold to care for your grandfather. Living with and caring for a person with dementia is challenging, often non rewarding, 24/7 work. As a caregiver you must get your needs met while trying to meet other’s needs. I suggest as a family (you and your parents) work out some time for you. Time to play, to find and interact with friends, to be out of the house and the responsibilities of caring for your grandfather. Contact the Alzheimer’s Association for ideas and help with community resources. Is there an Alzheimer’s Day Care your grandfather could attend a couple of days a week? The description you have given me of your grandfather’s behavior and progress is typical of dementia. I also realize that knowing his behavior is normal for dementia does not make it any easier to live with. It appears from your description that your grandfather is no where close to entering the dying process. He probably has years of decline ahead. You, Lieven, must find a way to have a life of your own while helping your family care for your grandfather. My blessings are with you. Barbara

Hello! I have a few stories regarding Alzheimer’s/Dementia and my Grandfather. I’ve been taking care of him since 2011 because my parents are busy with work. I’ve noticed that since 2015, he’s been declining. He often refuses to wash his hands, will not flush his toilet, only showers twice a month at maximum, and soils himself at least once a month. Since 2016, he has been driving dangerously but refused to give us his keys. In 2017 his license expired so we took his keys as advised by the DMV and he stopped going out of the house. Since the beginning of 2018 he often states that he wants to “go home” I explain that he’s lived here for a long time. He also will eat two breakfasts and two lunches, forgetting that he’s already eaten. In this month, June, he tells me he has to go to work and I have to explain that he hasn’t worked in over 20 years. He’s also been refusing to take his medication when I urge him too. He will only listen to my parents. He also has started to yell at his companion dog and not feeding/watering him (I make sure the dog is taken care of). It’s been very hard on me, putting my life on the back burner for him. I have very few friends as I had to watch over him from such a young age and he says nasty, racist things to anyone who comes by. I guess what I’m looking for here is support and encouragement.

Yes, Renee, this disease is awful, awful for the family as well as the person that has it. About whether to give food and water to your father (if he asks) and run the risk of aspirating. Such a hard call! If he does not appear to be wanting food or water then let it go. If he asks for food try a little soft bite and see what happens. Does he keep it in his mouth, does he chew, does he swallow. Watch him closely and have him spit the bite out rather than swallow it. In regards to liquids there is a gel like substance that can be added to water ( that seems to cause less problems than straight liquids) if he asks for a drink. Instead of giving actual liquids to drink try just wetting his tongue with a wet swab. Feels good and nothing to swallow. My guess is that he won’t even ask for food or water. The issue of not eating or drinking is more our (the watchers) problem than it is the person actually living it.
Also discuss your concerns with your hospice nurse. That is what she is there for—to support and guidance you through this experience.
My blessings are with you and your father during this challenging time. Barbara

My father has had dementia for almost 9 years. He’s been in a nursing home for the past year and has steadily declined. In February, he had pneumonia and was in septic shock when he arrived in the emergency room. He spent 6 days in the hospital and came back to the nursing home much weaker. Last Friday, he aspirated and developed pneumonia again.
He’s been coughing a lot when eating and drinking over the past few months. They told us he no longer can swallow safely. We agreed to not put a feeding tube in since he could still choke with that and it will not make him better. He is back at the nursing home now and is on hospice. The past 2 days, he has been very alert and talking – lots of talking which is not normal – and he doesn’t seem to be agitated at all. My question is should we give him any water or food if he asks? We know he could choke or aspirate again and don’t want that to happen, but it doesn’t seem right to not give him anything. This disease is so awful :(

Hi Amy, thank you for reaching out to me unfortunately I don’t really have any definitive answers for you. Dementia just doesn’t play by any rules. I have noticed, as with your mother, when a fall, injury or illness occurs the dementia seems to jump forward and not return to the previous level.
My only suggestion is to monitor her eating, or not eating, and her weight loss. At some point your physician may suggest artificial feeding and you will have a decision to make. Do you have my How Do I Know You booklet on dementia at end of life? https://bkbooks.com/collections/all-products/products/how-do-i-know-you-dementia-at-the-end-of-life. You may find it helpful. For now just love her, enjoy the good days, and offer food but don’t force. My blessings are with you and your mom. Barbara

Hello all! My mother was diagnosed with dementia about 5 years ago. Four years ago she fell straight back into a cement sidewalk. Although she wasn’t hurt, it did seem to speed up the dementia. Then a year later she fell and hit her head again on cement and broke her shoulder at the same time. We had to place her in a rehab facility which is located in a nursing home. Again the dementia sped up and she never came out of the nursing home. In the last couple of months she has declined dramatically. She refuses her dinner the majority of the time and has lost 22lbs in the last couple of months. She drinks some fluids but not a lot. She sleeps most of the time and is very lethargic. The last three nights she has tried getting out of bed in the middle of the night and fallen. I thought she was beginning the last stage, but this evening she ate 1/2 of her dinner. I don’t know what to think of it. Any insight you can give would be appreciated. Thank you.

I see a lot of older people with the same symptoms my husband has with his dementia, I worked with people with disabilities for 30 years this is far the most challenging. To make matters worse my husband is only 67 years old and I am 60 and now can not work so I can care for him 24/7. I hope someone on here can share some helpful hints to caring for someone with dementia he has had approximately 6 years. Thank you