Signs of Approaching Death with Dementia

Hi! I’m a working PSW of 25 years. I have found most of your answers kind and supportive. However, I have had instances when no indication of dying was present. I’ve had clients literally drop dead in front of me. They had zero issues of dementia or illness. I’m Sometimes death happens.
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BK Books replied:
Hi Jackie, there are two ways to die—fast or gradual. Fast death just happens, no warning, accident, stroke, heart attack. Gradual death has the process to it. Blessings! Barbara

My mum was diagnosed with frontotemporal dementia 5 years ago, shortly after my dad passed away suddenly. She declined very quickly and has been in memory care for the past 2 years. She is in a wheelchair (after breaking her hip and being unable to learn to walk again once it healed) and is increasingly frail. She is on a soft diet (spoon-fed). She has been unable to communicate clearly for some time now, although she still chats away in what is increasingly gibberish. While I am told she still has a good appetite, I have noticed in the last couple of months that she is sleeping much more (it is hard for me to catch her awake during visits and if I do, she invariably drifts off after a few minutes of ‘conversation), and her voice is getting softer when she talks. It is harder to catch her eye, although occasionally she will lock on and smile. I try asking the nurses at the home how she’s REALLY doing, but they just say “she’s doing great!” I read your booklet about dying with dementia and, honestly, I am feeling a little desperate thinking that my mum could go on in this state for much longer. It is hard to get my head around the possibility that the changes I am seeing in her aren’t signs of dying. I am grateful for the time I still have with her, but if I had my way, I would set her free. To my knowledge, she has no acute health issues beyond dementia, although she does grimace in her sleep sometimes, which makes me wonder if she is in pain. I have read elsewhere that most people with dementia die from an underlying condition and not from dementia itself, but I wonder how far the brain can decline without leading to death.
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BK Books replied:
Oh Emma,It is so hard to determine what is disease progression and what is approaching death when dementia is the key diagnosis. Dementia just doesn’t play by any of the usual dying “rules”. Food and not eating are your only clues. It is when she is consistently not eating enough calories to sustain her body that dying actually begins. Blessings to you and your mother! Barbara

My Mom has had cancer for 2 years now and just recently I had to put her in a nursing facility. She did live at home until recently when she had to have more help than I could offer her. It is very hard to see a loved one or friend slowly waste away, and that is what cancer does, and it is very painful, despite taking many pain management drugs. I am exhausted from taking care of her, only those who have cared for a cancer patient understands, it is a whole other physical problem. She is 86 and has lived a wonderful life and I pray at times for God to just take her on home with Him, but, I know it is in His timing. It is just so hard to see your loved one get weaker and weaker because of the cancer and you can’t do anything but just be with them for as long as they have.
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BK Books replied:
Kathy, Yes it is devastating to watch a loved one decline. Whether it is from cancer, dementia or any debilitating, life threatening disease it is hard (hard for the person and hard for the caregiver). My blessings are with you and your family. Barbara

92 Yr old Father is in memory care. Before he left my home, he was not sleeping, talking to people in the closet and thought he was back in the Korean War.
After trying to barricade himself in his room, we found a wonderful memory care and visit regularly. In the last two weeks, he contracted Covid. He went a week before any treatment plan was issued. They gave him a “Z-pack” for his growing cough. He only took it for the 4-5 days because of the medication strength, however, I understand it was to stop any developements not the Covid. He still tested positive on second testing of Covid but is now now wanting to eat. Is taking “Boost” supplements instead of meals. This has gone on for over a week. Supposedly the doctor there is now ordering lab work for possible UTI – I haven’t been able to see him due to his positive testing but am getting very concerned about his lack of eating and “we’ll get to him” illness. Any advice?
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BK Books replied:
HI Sally, I would show up at the facility and speak to the Director of Nurses (go to the top) and express your concerns. set up a protocol with him/her as to how care will be addressed and in a timely manner. I am glad they are giving him a liquid supplement,. They may need someone to feed him and encourage him to eat. At 92 I am concerned about him getting covid. In that age group it sometimes just takes one health issue to start a domino affect of deteriorating health issues. Blessings to you and your dad. Barbara

My husband is 83 has dementia he also has a fib and shortness of breath. He he is very big man and he is falling. I had to call 911 to lift him when he fell backwards into a tub, fell into the shower doors also.
I’m at my wits ends what to do, it’s getting harder and harder for me to take care of him! Please advise me my options! When I mention nursing home to him he gets very agited and he won’t go
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BK Books replied:
Hi Marlene, of course your husband gets upset when you mention nursing home. No one wants to go to a nursing home BUT that doesn’t mean he might not have to be in one if you can’t take care of him. You might start with talking with his physician and asking his/her advice. You can also talk with the hospital discharge planner and/or social worker. I would start exploring nursing homes, prices, locations now so when the time comes you will have ideas. Blessings! Barbara

My mother is 76 years old. She was diagnosed with Dementia almost three years ago. My Father just passed away 3 weeks ago, and they were married 58 years. Since his death I have know a tremendous change. She is getting more agitated and more aggressive with her words. She has stop bathing and gets a little aggressive when trying to bath her. I have also noticed that she talks of the past more often, and she has conversations with people who are no longer living. She has stopped eating breakfast but eats only lunch and may have snacks afterwards. I am confused on which stage she is in because she refuses to go to the doctor or conversation with people over the phone. What should I do?
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BK Books replied:
Hi Denise, Everything you described could be signs of approaching death, or signs of grief for her husband, or signs of progressing dementia. Dementia doesn’t follow the same rules of approaching death that other end of life diseases follow so it is almost impossible to figure out why changes occur and what they mean. What can you do? What you have been doing. Offer her food, if she refuses that’s okay. don’t force. Distract her when she is angry and agitated. Don’t take her behavior personally. Try to be in the present with her, try to have good moments (sometimes you will be successful, sometimes not) and take care of yourself. If she becomes too agitated you may want to contact her doctor yourself and explain her behavior. He may have a prescription for her aggressive behavior. This is a challenging time for both of you. Blessings! Barbara

Hi Joan, in response to your letter, you have done nothing wrong with your mom. She is not mad at you nor did you do anything to bring about this change in her behavior. Here are two things that could be contributing to this change. Breast cancer can metastasize to the brain so this personality change can be the result of the cancer. The other possibility is the dementia. Dementia doesn’t play by any rules and it could be the cause of this shift. The bottom line from what you have described is your mother is ready to leave this earth and join your father. She is saying clearly her work is done. Love her, spend time with her, listen to her if she wants to talk but know it isn’t words that are important now. It is your presense and your love and support. You might find my booklets in our End Of Life Guideline series helpful.
Blessings to you and your mom. Barbara

Hello,
My is metastatic breast cancer along with dementia. She is 83. My father past away 5 years ago. My struggle in trying to understand- she was fine this year. She would go outside in the back yard and sit at the patio. We would walk around the cemetery. Then, in August; a complete 180. She doesn’t want to walk anymore. No more going outside. Her food intake stopped. Did I do something wrong? All she talks about is going to be with my dad. Hence, she’s being saying this for 5 years. But now, she looks at me. Doesn’t say anything. And tells me she is ready to go to my dad. I really feel that I have done something wrong. Why all of. Sudden a quick decline?

Hi Lydia, what stamina your mom has! She sounds like quite a lady. I hate to see her lose what freedom she has by going into the Memory Care unit. Also change of any kind tends to cause an increase in dementia progression. I think as long as she is safe, doesn’t wander, won’t leave the building and the staff is comfortable with her having free range I’d hold off on the Memory Care as long as possible. Just remember reasoning with her about her parents being dead gets you nowhere. Maybe tell her they are out of town so she can’t see them right now and see what happens. She probably won’t remember that either but it keeps her from having to repeat her feeling, even the momentary sadness, of their being dead. Also talk to Reception and have them tell her mom is out of town. It is a small thing they can do. With dementia people don’t live in our reality. Our goal is to make their reality as loving and comfortable as possible. If that means bending the truth, so be it. If I can help, use my personal email Barbara@Bkbooks.com.
Blessings to you and your mom. Barbara

My mother, 92.5, lived autonomously, managing her home until 89. She chose to go to assisted living, not wanting to drive. She did pretty well, spots of poor memory with names and money matters. Before she moved I took over her bill paying after having cable turned off twice for non payment. Nov. 2029 – after being isolated for 6 months because of covid, she got a uti, and was hospitalized, when she was released, she was in a wheel chair, had a catheter, and was memory and logic gone.
Within weeks she went from chair to walker to walking without a cane. She is still unable to recall things, and repeats. Over the past two months she wants to talk to her parents- dead 55 and 46 years, and weeps like she has never heard. I tell her the reality because she will go downstairs and ask reception where her mom is.
She is social, loves to chat, watch movies go to chapel, and take care of her kitty. She finds her way to the cafeteria at appropriate times, and is not belligerent with staff or residents. If she would go to memory care in the same facility, she would loose that.
I’m feeling so lost and uncertain. Any suggestions.

Hi Sarah, about your aunt’s condition deteriorating so rapidly— has she been seen by a doctor? If not she should be. Something must be happening to cause this decline, and not just a UTI. Get some lab work done, you talk with her physician directly, be her advocate, NOW. Blessings! Barbara

Hello
My dear Aunt is 72, and what I’m finding hard to come to terms with, is that when I saw my aunt 2 weeks ago at her care home, she was completely mobile, talking, she knows me, we chatted about fashion, and what we were finally going to do now she will be able to come out of the care home for days out now lockdown rules have changed, in the space of 2 weeks she has gone dramatically down hill, first it was suspected UTI, but very quickly she couldn’t walk, and now she is not speaking, eating or drinking, it’s like she has skipped through middle to last stages within 2 weeks, I just wasn’t expecting her to deteriorate so rapidly in just 2 weeks, I just can’t understand it,
Please I need your advice
Many thanks

Hi Alex, understanding why dementia does what it does is challenging and it generally outplays us every time. Dementia just doesn’t play by any rules. Most diseases have a pattern. You generally know what to expect. With dementia there seems to be no pattern, at least as far as approaching death is concerned. Your mother’s roommate could have been having an affect on your mom’s behavior and decline. Thoughts are things, the energy of others affects us. Also her disease will progress and that could be what is occurring more rapidly now. Bottomline: nobody really knows. What you DO know is the dementia will progress. Your mom will reach a point of total withdrawal and not eating. Watch the eating and not eating that is your guide. Your job: love her, visit even if she doesn’t seem to know you, talk to her even if she doesn’t seem to understand. Use the time you have to bring some sunshine into her life in the manner that she can receive it.Blessings to you both. Barbara

Hello. My mom was diagnosed with frontotemporal dementia back in 2016. Ever since May of 2017, she has been in an assisted living facility. Within the past month, she has taken a sudden decline. She didn’t want to get out of bed, lost her appetite and stopped saying much. While this was happening, her roommate she had lived with since 2018, was in hospice with dementia. One week my Mom’s doctor she might need hospice because she wasn’t eating and had lost weight, but they were going to try and decrease some of her medicines to see if that helped. A week later I got a call my mom seemed to be doing better and eating so she was fine. A week after that, I got another call she wasn’t eating or drinking again and that the doctor would need to come out and look at her again, this time most likely calling in hospice.
Last Tuesday, my mom ended up having to go to the hospital due to some of her vitals being off and she had a UTI which she was treated for as well as a CT scan to check to make sure there wasn’t something else causing the sudden decline. My mom’s doctor came back out on Thursday and noticed no change in her and put in the orders for hospice. they came out last Friday to evaluate her and she was admitted into the program.
On Friday evening, her roommate passed away while my mom was in the room. Since then, she seems to be eating some of her food and talking a little more, but still won’t get out of bed and has some sores from lying in bed. She also can’t do anything on her own as far as toileting and such.

I spoke with her hospice nurse today and she said my mom seemed to be doing better and said because it was still new that they would monitor.

Since she has been up and down bad the past month, I just don’t know if it was just her roommate being sick that caused her decline or if my mom herself is just having a rallying moment. Any advice?

Hi Malaika, I do not know what is happening with your mom’s change of behavior. I can say enjoy this wonderful turn of events while you have them. Life for all of us is precarious. We need to enjoy the moments that we have. Treasure this special gift of time and clarity that life has given you and your mom. Blessings! Barbara

My mom has had dimentia for years. Recently, she is bedridden and had a difficult time speaking , showing happy emotions and swallowing. She loose much weight. We used to give her soup & vitamin supplements only for few months. She doesn’t speak unless she repeats what others say. However, last week she has started to eat solid food and has gain weight. She also gain appetite,laugh and starts to sit by herself on the bed. Is she feeling better?Any hope? I know it doesn’t have cure but may be in rare cases?

Hi Manuela, It sounds like you and your Dad are doing everything you can to help your mom. You are trying to get her meds and nutrition into her. Keep trying, keep offering and when she refuses know you are doing your best. What is happening is part of the disease process. There will come a time when she will probably refuse everything. Always offer, but no need to force or upset her. You are doing the best you can in a very difficult time. Blessings! Barbara PS: have you tried putting the crushed pills in a spoonful of ice cream?

Hello…my mother has cardiovascular dementia. She’s still eating well but my father says that she refuses to take her medication. He’s been crushing the pills and adding the powder to a liquid but she doesn’t always want to drink it. Any suggestions on how we could get her to intake more liquids and other ways of tricking the patient into taking the medication? (Whatever we can give in liquid form we do). Thank you for your help. Manuela

Hi Trish, I can see why you are confused and questioning how quickly your mother died. First I’ll say dementia doesn’t play by any rules. It is hard to anticipate its progress toward death. I see the gift in her death is that once her body shut down, it did it quickly. It is hard on us the survivors but for her there wasn’t a slow, drawn-out period of suffering. Now to the areas you expressed concern about in our letter: I have to take exception with the statement that her bedsore showed death was a few hours away.—just not so. Yes, the blood flow is slowing, repositioning is important, and skin breakdown will occur more rapidly as death approaches but I don’t consider it a valid sign of approaching death. What happened that resulted in your mother going from “ stage 4 to 7” in a matter of days? You’ll never know, but maybe there was a stroke or some other physical occurrence that occurred to begin her rapid decline. Whatever happened does not sound fixable. Whether she was at home, in a facility or in a hospital I think she would have died when she died. You might write her a letter and put your thoughts, concerns and love down on paper. Burn the letter and scatter the ashes to the wind, releasing all the concerns and unsaid words into the universe.
Blessings! Barbara

Hello, my 79 year old mother died a few weeks ago from Dementia. I have been taking care of her and my dad for the past five years. My mom had Lung Cancer 15 years ago and had one lung removed. She had COPD. A week before she died she was in the hospital for chest pain. My mom has had Frontal Dementia since 2012. Right after we brought her home from the hospital she seemed fine. She was sitting up and talking. The next day everything went down hill. She stopped talking and wouldn’t (or couldn’t get up). She was wetting the bed and stopped eating. The second day she was just repeating our words to us. On the fourth day she was in what appeared to be a coma and developed a very high fever (she never had a fever in her entire life) The Hospice nurse came in because she had developed a sore on her tail bone (which I was later told was a sign of near death). The nurse told me my mom had 24 to 48 to live. My mom died in my arms four hours later. I am so heartbroken and I can’t help but question if I did everything I could have. Should I have taken her to the hospital? What did I miss? I always took such good care of her. I knew she was going to die because of the Dementia but it just seemed like she went from stage 4 to stage 7 in less then a week. I feel like I just let her die. What could I have done?

Hi Diana, from what you have described it does sound like your mother has entered the dying process. Have you read my booklets How Do I Know You? and “ Gone From My Sight”? I think you will find some guidance in them. How are you answering her question of is she dying? I don’t know how severe her dementia is but if she just doesn’t remember your answers side tract the answer, no point scaring or upsetting her. I would respond once to her question. You can say “Yes, Mom, I think you are. I’m here with you and we’ll do this together.” If she asks again it shows she hasn’t remembered and no need to tell her again. My thoughts and blessings are with you. If you have more questions use my personal email barbara@bkbooks.com. I’ll help you if I can. Barbara

My mother is 82, she has Dementia and aphasia she has stopped eating because of choking and she drinks just alittle and she does sleep a lot. She keeps asking if she is dying. She is picking I think hallucinations too is she close to death

Hi, in response to your question of how close to dying is your wife, I i don’t have enough medical information to be specific but I will say that from what you have described she does not sound like she is days or even weeks from death. I have not heard of “sliding down in the wheel chair” as any sign of approaching death so I wouldn’t use that as a guideline. With dementia you look for food intake, or should I say lack of food intake. When she can no longer eat, (has food put in her mouth but she doesn’t swallow, chokes when she tries to swallow food —then you will know that death is near (days to weeks). Please read my booklet “How Do I Know You”. It will give you guidance and support in your decision making. Telling me that you are wearing down tells me you should begin looking for a nursing facility. You must take care of yourself as well as your wife. If caring for her has become too hard then now is the time to put her in a memory care facility. You will visit, you will love her and you will take care of both of you.
My blessings are with you during this challenging time. Barbara

My wife has Parkinson’s disease dementia. She is at home and I have an aide during her waking hours. Even with that it is very hard on me. I am considering placing her in a memory care unit. I am trying to figure out how close to dying she is because if it is a matter of a few weeks I would keep her home. We have in home hospice. Her lungs and heart are fine. She is still eating though less. She slides down in her wheelchair. Sometimes she can engage with others and sometimes not. She is oriented. The hospice doctor said sliding in the wheelchair is a sign she is close to dying. I am not sure why. Please help me figure out how to tell.

Hi Paul, it does sound like she has moved closer in the dying process. Just a word about the holidays, remember we have limited control over the time that we die. This is just me but I think those that die on holidays or birthdays give an extra gift of “remember me”. They are including themselves in family traditions—forever.
If you have really strong feelings about her not dying during the holidays, tell her in a heart to heart talk. It is easier to talk with someone who doesn’t respond but know she will hear you. Know that whatever her choice it is her gift.
Blessings! Barbara

Hi Barbara,

We conversed back in early October. You told me the tell tail sign would be eating or lack there of. Well we have reached that point. No solids in the past week. Only a little ice cream here and there. Complains of hurting all over and doesn’t want touched or cleaned. We have moved on to the Fentanyl patch for the pain. Is sleeping 20 plus hours a day. Is also being treated for a UTI. Hospice tells me we are down to the final weeks not months. I am just hoping she makes it through the holidays. Thank you for all the support you give. Have a Happy Holiday.

Hi Athena, in response to your blog question, of do you wait to get into a Palliative Care hospital or return to the LTC? It sounds like if you are going onto a waiting list you have no alternative but to return to the LTC until a bed becomes available in the PC hospital. It is so hard to predict anything with dementia. It just doesn’t play by the rules. Food is your determining factor. I think you are right to not go the feeding tube route. At 91, your mum’s body is tired and wearing out. It is trying to let go, although ever so slowly. Your doctor, in saying your mum probably has weeks to months, is estimating as well as anyone can. My blessings are with you during this challenging time. Barbara

Hi, My mum is 91 and has struggled with Dementia and Primary Progressive Aphasia for about 7-8 years. She’s been in Long Term Care home for the past 4 years and now has complete Aphasia and is unable to speak.

n the last few months she lost considerable weight (she’s probably about 100 lbs now). She survived Pneumonia in August but now has progressively decreased ability to swallow.
In the last couple of months she became very frail and developed bedsores. Her main bedsore on her Sacrum has now progressed to Stage 4, became infected and she developed a fever. We took her to hospital. She’s now declared as Palliative and is barely eating – more because she can’t swallow, than lack of trying to eat. We don’t think a feeding tube or prolonging life is a positive option as this point. They said she has weeks to months to live. We have to decide where and how best to manage her end of life care with comfort and dignity. Would she be better served if we moved her to a palliative care hospital rather than going back to her understaffed LTC home? Or does is sound like she doesn’t have that long to wait for one?

Hi Carla, yes, it does seem your grandmother has entered the dying process. Don’t force her to eat or drink. Offer but it is okay if she refuses. Her body is trying to let go and it is food that holds us here. Love her, be there with her even if she doesn’t seem to know you are there. Words don’t matter now, just presence.
My blessings are with you and your grandmother. Barbara

My 97 year young Grandmother has Dementia, a few months back she was hallucinating alot, she has had several falls, lost alot of weight, is 5’9 and 100lbs, now she is at the point of sleeping all day even during the times when she is eating we have to wake her and remind her to swallow at which she then hollers, ‘you don’t know my body, then goes back to sleep, I’m afraid she will choke her Dentures no longer fit so we feed her soft foods. She also has Diabetes and at times it’s very hard to awake her, could she be nearing her transition stage?

Hi Peter, it is so hard watching and being with some one you love who has basically “left this world” but is still in a physical body. Dementia creates a shell. The person we knew is hidden in there somewhere, probably never to be seen again. Peter, just love her, visit, hold her hand if she lets you, and talk with (to) her even if it appears she does not hear or understand. Do this for you as much as for her. You are on a long journey. My blessings are with you. Barbara

My mum has dementia she is in a care home who do a wonderful job , she is now bed ridden and doubly incontinent. She has always been deaf but in the last few weeks is now completely deaf, she doesn’t know who I am anymore. She gets very confused and agitated at times and then sleeps for days. She still eats food and drink when the carers feed and they are so patient with her. My mum was a very active Christian but it all seams to have gone away. I cant talk to her or get her to understand anything. The only thing that gets any response is a cuddly toy dog she has. Sometimes she talks but its difficult to understand what she’s thinking about or to respond as she cant hear, I try to hold her hand and find she likes it when I stroke her head. But its getting me down and its so awful to watch this.
Pete

Hi Paul, getting old and then adding dementia is oh so challenging, not just for the elderly person but for the family and everyone involved in the resulting care. It is hard watching our loved one decline. From what you have told me about your mother’s condition she is not at a place where we can put a time line to her decline. Watch her food intake or lack of intake, that will be your clue.
My blessings are with you both. Barbara

Hi Barbara,

Mom was doing well until 93 when she needed major surgery. Since then (year and a half) mom has developed dementia. She is 95 now and also blind and can not hear. She is in memory care. She only eats a few bites of food at meals and consumes small amounts of fluid. She is on Oxycontin extended release for her back pain. Her memory is gone. She tells me someone came to see her when they didn’t. That she got a shower and I know they have not been there yet. She can’t finish a sentence most of the time. When I use to come into the room she was so happy but now not so much, just a where have you been. I tell her work but it doesn’t seem to sink in. I know this could go on for some time. It is hard to watch a love one suffer. I can’t even guess when she will pass. I just know it will be a blessing when she doesn’t have to exist in a broken body and mind.

Thanks,
Paul

Hi Mary, it does sound like, with the changes your mother is showing, she has entered the dying process. The sliding in her chair seems to be lack of focus and body control, all part of her decline. The loss of interest in eating is part of the dying process. Dementia is a slow road but it does appear your mother has began her final journey. Be sure to talk with your hospice team about any of your concerns. They are there to not just help your mom but to support and guide you and your sister through this challenging time. My blessings are with you and your family. Barbara

My Mom turns 88 this week. She has had dementia for about 10 years. She has received 24 hour care from my sister and I for the last 16 months. Just in the last 2 weeks, she has become unable to sit in a chair because she slides out of it, as if she can’t hold herself in it. She seems content in her bed, though. She is also under Hospice care. She eats about 1/2 piece of toast and a piece of bacon every morning the last couple of weeks as well, this is also a significant decline. She eats virtually nothing else as she seems to have lost interest in eating anything, including sweets. My question is about the sitting and whether that is a progression of dementia or something else I should have looked into? Also, is the loss of interest in food different from the physical inability to eat, or an indication of preparing herself? She’s very tiny at 90 lbs she’s lost probably 50 lbs in the last 2 years.

Hi Kim, about your mother’s change in behavior, I don’t know. Dementia is so unique to each person there just doesn’t seem to be any guidelines. If she didn’t have dementia as her diagnosis I would say , yes, she has entered the dying process which begins months before death BUT with dementia the only real guideline to approaching death is eating. If you don’t eat you don’t live. Wish I had more to offer you. Blessings! Barbara

Hi Lala, watching a loved one trapped in a non functioning body is so difficult. I understand how you want her freed from the existence disease has put her in. As much as we want the suffering to stop we must let life follow it’s course. The key to life is eating. Always offer food but don’t force it. As swallowing becomes more of an issue watch for choking, watch for food just staying in her mouth. There will come a point where giving her food isn’t safe because of choking. At that point she will have a few weeks to live depending on her body size. I have a booklet, How Do I Know You? which may be helpful during the next months. My blessings are with you and your family. Barbara

Hello Barbara my mother is 88 years old diagnosed with dementia. She is at a stage where she repeats herself, is angry, hallucinating struggles to find words but knows everyone. She is wheelchair bound has a foley catch repeated UTI’s. She is on hospice because of the above mentioned. A few things have changed lately and hopefully you can shed some light. She was eating sweets and suckers like crazy and that has decreased over the last month. Nothing is sounding good. She eats less now sleeps a lot and having very vivid dreams with many friends and family that have been deceased and can give me details of the dreams. For the last few weeks she has been very sane remembering things that are happening. Don’t get me wrong there is still the struggle to find some words daily, but not angry it seems very strange to me. Is this a process some go through?

Hello, I hope you can help us here. My mother has been sick with Alzheimer’s for about 15 years now. At this point she speaks not even a word, is mostly bed ridden unless we pick her up to put her in a chair. She can’t hold her head up, sleeps about 22 hours a day. But she is still eating. Has issues eating because she bends her neck almost to her stomach when she swollows. I feel so quilty to say this but we want this over for her. Any ideas how much longer? I can’t take seeing her like this anymore. It’s killing me. I want her to go to heaven to be with dad. Ideas? Thoughts?
Thank you in advance!

Hi Glenn, dementia isn’t called “The long goodbye” for nothing. It is a horrible, slow disease. It doesn’t affect just one person it affects the caregiver as well. As you know it is a 24/7 job. I know it is done with love but it still takes its toll on the caregiver. You didn’t mention your wife’s eating abilities. If she is still eating, even small amounts then from what you have described she does not appear to have entered the dying process of weeks or even a few months. As devastating as her life is now she has a ways to go yet. It isn’t until she isn’t eating or has difficulty swallowing or choking that she enters the dying process of weeks. Have you talked with her doctor about a hospice referral. Some hospices will take people with dementia as the only diagnosis. If you are in a city with several hospices call each one for an interview. With hospice you can get help with bathing, support, guidance and volunteers to give you a chance to get out of the house or just take a nap.
Hospice also has a social worker that can help you get some resources into your home to help you. Also check out your local Alzheimer’s Association for support and guidance. My blessing are with you both. Barbara

Hi Gerry, from your description of what is occurring with your mother in law it does appear she has entered the dying process. I would just leave her in bed and not disrupt her by trying to get her to a chair. Change her position in bed every 2 hours from side to side to her back so she doesn’t get pressure sores. This is the time to have a foley catheter inserted into her bladder so she is kept dry from urine. I would use adult diapers for bowel movements. Since she is now having difficult swallowing or forgetting to swallow you can try putting soft food in her mouth but if it just sits there you don’t want her choking so stop trying. The same with fluids if she will choke or it just runs out of her mouth. Her mouth will get dry so you need to do good mouth care and keep her lips and inside of her mouth moist. You are probably talking a few weeks of life if she continues as I described. I have 3 booklets that will be helpful for you. It sounds like you are in England. If so go back to my website and get the e version of the End of Life guideline series. You don’t need A Time To Live but the other 3 will come in handy. It will be harder to get my booklet on dementia at end of life to you—sorry, that would be helpful also. If you are in the States or Canada I can mail the 3 booklets to you. Gone From My Sight, The Eleventh Hour and How Do I Know You. This will be a challenging few weeks (or less). Love her, talk to her even through she can’t respond. My blessings are with you and your family. Barbara

Hi my name is Glenn,
My wife was diagnosed with Alzheimer’s in 2005 when she was 59 years old. The progression has been very slow and now after 14 years Barbara has parkinson’s and can’t talk, walk, move her arms, legs hands and I have to feed her. She is aware of me. Barbara’s legs are so tight together that I can barely change her depends or clean her. Gets lots of UTIs. Not sure if there is anything I can do for her legs. I’m not sure if Barbara is in late stage dementia or how much longer she has in her life. I’m 75 with a very bad back and I can not afford any help. I take care of Barbara by my self now for over 5 years.

I found you article interesting, we live with and care for my Mum in Law, she has dementia and the last few months have been extremely challenging… MIL would stay awake for 4-5 days fretting and trying to get up or out of her chair to go home, this would be excessive every few seconds, its terrible to say but its a blessing she isnt able to get up and go about or we would be incapable of caring for her. She is home and has been wheelchair bound for 3 years due to severe arthritis and old age, did i mention she is 97 years young. After the extended bouts of activity, she would fall asleep exhausted and be virtually comatose for two days, be fine for a day and the process would start all over again. But she was communicating and eating well, in fact always hungry. The last 3 wks have been completely different. The fight has gone.. barely speaks now its one word or a grunt if you persist with a question. She has difficulty sucking through a straw, can’t hold a beaker or sit up straight. She doesn’t turn her head or respond most of the time, there is a blank ness, with the odd glimmer of herself. Funny how you can still see them laugh with their eyes even when there is no facial movement. When we do get some food into her, she can forget to swallow it and has to be coaxed to do so. She seems to be going in and out of consciousness, with little or no interest, I don’t think she is in pain and when asked in the brief moments she indicated she isn’t with a slight sideways twitch. She has patches to manage her pain for some years now. I am worried her pain will increase and we wont realise, and this would be distressing and not something we would want for her. From you article I think MIL is starting the dying process. We have a care team who call 4 times a day to manage her toileting and personal care, along with hoisting from bed to chair etc. She cant sit straight in the chair now and i’m concerned this may be causing discomfort, as she doesn’t show any interest in the change of scenery, would it be better to keep her in bed, even propping her up with pillows doesn’t stop her leaning to the side. What can we expect in the next few weeks and months. Should we be doing more to prepare ?

Hi Liz, from what you have written about your mother’s changes it appears she has indeed entered the dying process. Time is always a difficult thing to predict. You didn’t mention your mother’s body size. How much “fat on our bones” is a factor on how quickly death will come when we are not eating. My guess is several weeks if she is thin and eating very little. The difficulty swallowing will increase to the point you will need to watch for choking or just holding the food in her mouth and not swallowing.. Because getting out of bed to use the toilet will become impossible ask the doctor to insert a foly catheter into her bladder and use diapers for bowel movements. You don’t want to get her out of bed, fall with you and not be able to get her back to bed with both of you hurt. Do you have access to hospice services? They would be able to help you with physical care, guidance and maybe even volunteers to give you a chance to leave the house or just sleep. This will be a challenging time for you. Your mother will sleep more and more as she slowly leaves this world and her body. Sit with her, hold her hand, love her. It sounds like you are doing just that. My blessings are with you and your mom. Barbara

My mother is 91. Diagnosed with vascula dementia 6yrs ago. Lives alone. Always been physically active just slower. A gradual / marked deterioration over that time.

3weeks ago her knee gave way. Since then she has remained in bed. She has not eaten to speak of since certainly nothing in the last 2weeks. She is barely drinking . Only sips of tea. She is struggling to swallow. She is very weak now and sleeping most of the time. Her voice is a higher pitch and weak. Her mouth is dry

Holding even a cup is tough.. 2 doctors have visited in the last 2weeks. The last one has given me a do not resusitate form. She just said keep doing what im doing.

She can barely walk now and im struggling to get her to the toilet. Indeed, the effort of getting off the bed is almost too much for her.

I have no family or outside help. That said i have requested an assessment though this can take several weeks.. i feel totally stuck. I sit with her chat when we can. Make sure she is comfortable. I dont know what else to do.

Based on what i have written, is it your opinion that she will succumb sooner rather than later?. I feel myself this is indeed happening

Hi Jo, we die the way we have lived and according to our personality. From what you have described of your mother’s actions it seems she was not very sharing of her feelings and thoughts throughout her life. You said she lived a “private lifestyle” so it seems understandable to me that she would isolate herself from others, even her family, as she approached her death. At some point she did know she was dying, (we all know just may not share that knowledge with others) but that does not means she would tell anyone.
You might write your mom a letter. Put your concerns, thoughts on paper along with anything that is in your heart that you need to say to her, that you did not get the chance to tell her before she died. Write it all out now, along with all the tears you need to share. When you have written it all, the positive and the negative things in your relationship, burn the letter. Release the ashes along with the regrets and concerns to the wind. Know she will understand. My blessings are with you. Barbara

My 56 year old mother died a month ago. In the couple of months prior to her death, she lost a lot of weight, stopped talking or expressing her feelings. My father was in the hospital due to a spine surgery, so my siblings and I were busy with him. Her only complaint was some back pain. We took her to the ER and they said nothing is critical.

3 days before her death, she locked herself in her room (she always lived a private lifestyle). When we asked her to open. She only said I’ll come out in a bit.

Now I have this huge guilt and “we should have seen it coming “ feeling.

My question is, did she know that her condition was very critical? Why didn’t she ask for help? Why did she insist on locking her door? Why didn’t she tell us how she felt? I asked her repeatedly weeks earlier to tell me how she felt but she didn’t answer.

Hi Nilu, I just don’t have enough medical history to tell you what is happening with your husband. I will say if a person doesn’t eat they won’t live. Particularly with dementia not eating or having difficulty swallowing or forgetting how to swallow indicates that they are entering the dying process. How long that takes depends on how much or how little they are able to eat and drink and how much weight is on their body when they begin not eating. I’m sorry I can’t be more specific. I know this is a challenging time for you. My blessings are with you and your husband. Barbara