A year later: One year of care for a bedridden mother

Last October, my mother became bedridden, a consequence of the progression of her dementia. Frankly, I had always dreaded the possibility of taking care of someone so fully bedridden, and everyone I knew dreaded such a state, too. With a year over, I guess it’s time to share how she reached the bed-ridden state and how home care for this has been this last one year.

Looking back to the months before she became bedridden, I am surprised we didn’t realize how much she was deteriorating. She was facing obvious problems while walking; she would not lift her legs, even on being prompted. She would drag a leg only after a lot of coaxing, not lift it. Sometimes she would move the same leg twice; for example, she would move her left leg twice while the right leg stayed back, and we had to yank her upright or she’d have fallen. Every trip to the bathroom was an ordeal for her and for us, and soiling became common. She reduced speaking, and barely showed any interest in anything. We hoped she would improve, and kept trying to talk to her, playing games, and so on, telling ourselves that she was tired.

On a day in late September, while sitting in a chair she fell sideways at a strange angle and bumped her eye on the chair’s arm in a contortion a circus performer would have envied. The eye turned alarmingly bloodshot; frightened, we called the doctor who prescribed eye drops to start on and then came for a visit. She examined the eye with her torch and told us she didn’t think there was any deep injury, but recommended we get my mother checked up the next morning by a specialist who would have the right equipment to do a proper check. So next morning, there we were, at a hospital, my mother in a wheelchair, flanked by us.

Everyone at the hospital was very nice to us. The attendant who pushed the wheelchair talked sweetly to my mother, the receptionist talked sweetly, the nurse, the doctor, the doctor’s intern, all were extremely helpful. My mother looked piteously at them and held out her hand; by turns, they took her hands and squeezed it reassuringly.  We confirmed that the injury was superficial, and that nothing needs to be done, and came back.

My mother’s inability to walk worsened after that. She totally stopped communicating and seemed very dejected. Apparently the hospital visit had disheartened my mother very much. Perhaps she took all that solicitousness as a sign of how grave her condition was. Perhaps she feared it was a prelude to her being abandoned–she had lost two sisters and a mother to TB when she as a child. Perhaps she never quite registered we had come back from the hospital. I have thought a lot about what could have happened, and what we could have done differently, but I can’t think of anything.

A few days later, we noticed her wincing while passing urine. A checkup showed a urinary tract infection and a mild electrolyte imbalance. Treatment was started.

Anyway, so by October she was officially bed-ridden. We would lift her to a chair for her meals, and then place her back on the bed. We would do the chair-bed-chair-bed routine every few hours, and our own backs were quite stressed by then.  Her bed was adjacent a wall; after some days, we started propping her up against cushions placed against the wall for her meals. She was in no condition to know what a bed-pan was, so we used diapers. We kept learning every day. We realized we had to turn her every few hours. Talcum powder was bought. Plastic sheets, cotton sheets and half sheets, all were placed appropriately. A waterbed was tried out, and its squelching sounds and swaying feeling made it unusable. Handling her on the low bed, propping her up for food, all was strenuous. Catheters placed in the beginning caused spasms and bleeding; as it became clear that she had no problem passing urine, the catheter was removed.

In those early days, we thought that once her infection was under control and her electrolytes balanced, she would resume walking. She didn’t.

We switched to a hospital bed a couple of months later. Added an airbed. In retrospect we should have done that earlier. And perhaps, we could have recognized in September that she was unable to walk, and not tried to keep dragging her to the bathroom and back as we “hoped” she would improve.

Around December, we realized that repeated use of diapers was affecting her skin even though we tried changing the diaper as soon as we realized it was soiled. We switched to using underpads on the bed instead of diapers, so that the skin remained dry enough.

Around January, she developed a sudden fever. No immediate cause was visible, but it was clearly some infection so the doctor started her on a broad-spectrum antibiotic.  The mystery cleared two days later when we woke up and found two of her teeth missing. Ah, a tooth infection. One missing tooth was found under her tongue; the other was never found. We suspect she swallowed it. I guess we were lucky–if it had gone the wrong way down her throat, it would have choked her.

The loss of two teeth meant that her denture no longer fitted. We took the denture to the dentist and he tried adjusting it, but the teeth still remaining in the mouth were insufficient to hold the denture in place. A new denture could not be made because she was in no state for repeated trips to the dentist. We switched to liquidised food.

Ever since she became bed-ridden, she had also stopped talking. Well, almost. She would say a word or two sometimes, or even an entire sentence.

Like when the doctor once asked her, “Kaisi hain maaji? Mujhe pehchanti hain?” (how are you, mother, do you recognize me?) and she suddenly replied, “haan haan, kyon nahin, zaroor pehchanti hoon” (of course, why not, of course I recognize you) which left us all flummoxed for a few minutes.

Most of the days, though, we were using her expression and body language to guess what she wanted. We were observant about her smile or nod or her shaking her head or wincing. If she didn’t like a dish, she’d spit it out, which required us to be very alert while feeding her.

There has been nothing dramatic since the broken-tooth incident, just a very slow decline in her skin quality and an increasing tendency to get a cough. She tends to scratch herself energetically at times; we keep her nails filed smooth, but her skin is so delicate now that she manages to hurt herself quite often. We use oven mitts sometimes.  She often has problems swallowing, and falls asleep very easily, often in the middle of a “feed”.

We’ve by now found a rhythm of when to feed her, when to turn her, change her, clean her.

A few times a day, when she is awake, one of us holds her hand and talks to her. We use simple sentences, talk of simple things. Like naming the city we are in. Describing the weather. We read out ultra simple letters written specially for her by my son. I talk to her about her childhood, using abbreviated versions of stuff she told me when I was young. We show her labelled albums with large, easy to see pictures. Sometimes we read out (with some element of dramatizing) a tale or two from a large-print Panchatantra book. Sometimes, if she looks relatively alert, I draw a simple map and explain where Delhi is, and Shimla and Lahore, cities she spent her childhood in. She can no longer use her reading glasses, so everything we show her has to be simple, large, bold.  Usually she smiles and seems content; sometimes, she does not react.

A few years ago, I had assumed that any bed-ridden person would feel helpless and miserable all the time. That is not true for her. She seems happier now than I have seen her before (even when she was young). Especially after all the frustration and agitation she showed because of the inabilities caused by dementia, this is so much pleasanter to see. She seems to be at peace with herself, and is affectionate towards all of us. She holds my hand and takes it to her lips and kisses it. If someone had told me five years ago that I’d be spending a hour or two every day just holding her hand and sitting near her, I’d not have believed it. Hey, it sounds soppy. That I can experience her affection again seems nothing short of a miracle.

When people hear that my mother is bed-ridden, they fluctuate between sympathy and pity for me and for her. I try explaining to them that there is nothing pitiable about her condition. I do try telling them, but I don’t think they believe me; they probably think I’m being courageous or a martyr, or both.

This is not to say that there are no problems.

Her cough gets alarming at times, and keeps us tense. She is so frail that when she has those racking coughs her entire chest shakes and it seems all her energy is spent in a single bout of cough. Apparently she is not always able to swallow her own secretions, and this may cause aspiration pneumonia. Every time we feed her, and she forgets to swallow, we worry that she will not eat enough, or that she will choke. Every time she scratches herself and her skin gets injured, we are scared of infection. The possibility of bedsores worries us. What we are seeing is a slow decline, and there is not much we can do.

Then, we fear what else could go wrong. I dread to think  that we may be forced to visit a hospital for some emergency.It is obvious that a hospital visit, with its smells and bustle and strange faces, is traumatic for a dementia patient who is clueless on why such a visit is required. We hope that we can spare her such trauma and let her stay peacefully with us till the end, surrounded by people she knows.

Yes, we are frightened by some eventualities and what may precede them. And with a bed-ridden patient, the imminence of such eventualities cannot be forgotten the way we forget them in “normal” life, where we set aside the possibility of death with an unstated assumption that “it won’t happen in the near future.”

But I think the point that gets missed, that I find so difficult to make people understand, that looking after a bed-ridden patient is not merely a load of work and worries and helplessness. There are some very, very beautiful moments one can share with a bedridden person, and my mother’s smile and the way she holds my hand sometimes is like an unexpected gift.

Dementia is a very long-drawn condition. For many years, as she and we struggled to cope with her diminishing abilities, all of us faced frustration and unhappiness. Things improved after I figured out how to reduce her frustration and mine, and found pleasurable activities we could do together, but her frustration kept returning sporadically. She would sometimes say, Why does this happen only to me? And I did not know what to tell her. She could not understand that she had dementia. She could not understand that she had dementia.

Caregivers I meet often dread how they will handle this stage of dementia. The fact is, looking after late-stage dementia is a totally different ball game from looking after someone in early or mid-stage dementia. As another caregiver once put it when she heard others talk of challenging behaviour: I know what you are saying and I’ve been there. But now, my mother is like a six-month old child, and there is only love.

Again, this is not to say things are easy. The care of a bed-ridden patient requires a lot of physical work. Also, the decline is so very obvious, and there are repeated alarming situations.

But a year after my mother has become bed-ridden, I can honestly write that I am glad to care for her and be with her at this stage  where there is acceptance and peace and affection. For her, and for us around her.

My blog entries of my experiences of looking after my bedridden mother through her late-stage dementia are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes

Edited to add:. My mother died about a year-and-a-half after I made this post. In addition to more blog entries describing my experiences of looking after her collected here, I then recorded a video where I talk of late stage dementia care:

(if the player does not load, visit this youtube link directly)

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care in this set of pages: https://swapnawrites.wordpress.com/about-contact/

61 Responses to A year later: One year of care for a bedridden mother

  1. Krishna says:

    Hello Swapna..
    Thank you for sharing this journey. It is enlightening, educating and empowering.

  2. anusuya says:

    Thanks Swapna for this.. I often check out ur blog and the site for useful tips. I did dad is going the complete bedridden way. And as you know its all so fast (thanks to years of misdiagnosis) that we are not even prepared for looking after early and mid-stage, forget about late stage. Its like taking the Class XII boards just after preschool. And just dont know how to learn all this overnight. He hospitalised again with some infections. Before that for two months he was in the bed-chair-bed stage. I have this feeling it’s going to be totally bed when he comes back. Btw, is buying a hospital bed essential? How much does it cost roughly?

    • swapnawrites says:

      Yes, understanding that the problems are caused by dementia takes time and that seems like such a waste. The ways to care are not instincitive, either. I have written to you separately re the costs, but basically I found a hospital bed an essential part of the care setup of a bedridden person because it makes it possible for a single person to do much more, even if frail, and without the backache problems. Beds can be purchased or hired, and hiring may allow you to check whether you are happy with it, and also see what height and which other features to look for. You’ll also need an air-bed (alternating air mattress. Have a look at my late-stage care page at: http://dementia-care-notes.in/caregivers/toolkit/late-stage-care/. And contact me for more input if you want.

      • Marianne says:

        Thanks for sharing. My mother has been bed ridden for 8 weeks. It started with an ameonia, then down hill from there. Just wondering if I should bring her home – she would like to see me everyday and me also – but I am still working a senoir my self find it very difficult, they offered allot of help??? Only me – everytime I see her I want her home??? pro’s and con’t

  3. atul keshri says:

    hi sapna
    thnx for sharing ur jrny.
    my mother is also is in late stage of dementia and few days ago she has an seizure attact. so we rush to the nearest hospital. now she recoverd from that attack but she is now completly bed ridde. we also arrange home nurse for her so that we could provide extra care for her.

    thnx again for shairing ur jrny. some how i can co relate your experince with mine.

  4. Abhishek Keshri says:

    What i could i say after reading this.. i felt this is the story of my mother,, My mother is 61 and is in the late stage dementia(Alzheimer’s).. she was diagnosed with dementia some 7 years back and now she is completely bedridden ,and like u have mentioned in your blog that your mother is like a 6 months baby , i feel the same for my mother… i could relate to each single word of yours.. my mother has forgotten how to chew and swallow food and liquid , we have been feeding her for last 3 years through riles tube(nose tube).. she is a like a innocent child that never wants to grow up now.. we are born as a child and die as an old but my mother though is 61 but she is not old she is traveling back and has become a kid now.. i wonder sometimes what my mother thinks or does she really think even as it looks apparent that she has no memory.. i wish i could peep inside her brain and could see what is running inside her brain but alas i cannot do that..
    your efforts are highly appreciated.. stay blessed

  5. Sunamika Pandey says:

    Hi Swapna, I just read your this post and I can relate to your feelings that while taking care of a bedridden patients there are moments which are very beautiful and touching..

    I and my father along with a nurse are taking care of my mother who suffers from MSA (Multiple System Atrpohy) for the last 1 1/2 yrs. This is a neurodegenratie disease in which the neurons in the brain start dying. Its very hard to detect, only postural hypotension is a clear indication of it. Till now there is no known cause as why neurons die and there is no cure. Also it is very rare. 4 person out of 1 lakh have this disease.

    She was officially diagnosed in late 2010. But I think the symptoms started many years ago. Things came forefront when she was diagnosed with diabetes in early 2009. She started having difficulties in walking, talking, urine retention, sleep apnea. She started falling. We tried everything from Allopathy to Naturopathy to Ayurveda. Though she was benefitted by naturopathy in trying to improve we gave her some ayurvedic medicines. But this backfired and her conditions worsened. She became wheelchair bound, no hands movement, difficulty speaking. Finally in Jan 2012, she aspirated milk in her lungs and we had to rush her to hospital in the dead of the night. We brought her back from hospital in late Mar 2012.

    Now she is completely bedridden. She has a tracheostomy tube in her neck to help her breathe changed every month, a Peg tube in her stomach to feed (She has 7 three hourly liquid food) changed every 8 months, a urine catheter, stockings to stabilize her BP, a BiPaP, Oxygen cylinder, Suction machine to take out cough, air mattress.

    As of now, her BP is a bit of a problem, UTI, cough are also there. But we are trying to circumspect these. I will like to write some of the measures which we are using so that somebody can use it in their case but first I think they should consult their doctor.

    1. For bedsores we used a homeopathic medicine called “Calendula”. My mother bedsores were cured. Also to avoid further bedsores we turn her after every 1 1/2 hr.

    2. We have started giving her Flaxseed Oil (rich in Omega 3) in her feeds about 4 table spoon for the last 1 month. Her skin techture has improved, maybe there is some weight gain but it is not very pronounced.

    3. After seeing a video about a American doctor saying that Coconut Oil has improved the condition of her Husband who has Alzheimer, we have started preparing it at home and giving her from a week.

    Sorry, this got very long but I felt like sharing it. Each day is hectic but when she sometimes smiles, its ok….

    • Thanks for sharing your story, Sunamika. I had only vaguely heard about MSA earlier; it must be so difficult to see your mother go through this, and I am relieved to know that you are able to find peace and beauty amidst all the care you have to give…

  6. syeeda says:

    am also a caregiver for late stage dimentia patient
    she is my mother in law
    she is totally bedridden,and is on fluids from 4 months
    she has diabetes,bp ,dimentia
    i can relate every word of urs with mine……
    200ml liquid every 2hrs,and 150ml water evry hour
    she is so innocent.lovely……….
    may god bless her in heaven………
    seeing her in this sitiuation is unbearable……….
    may god help her out of situation…………
    we r using diapers,airbed……….
    appointed a nurse for xtra care
    i hav 2 kids.one 2 and half years old and the other is jst 6months……..
    sometimes urinary infections of my mother in law threats me about my children…………
    what precautions shud i take for my childrens safety?
    what is her life xpectancy?
    i brush her teeth once in a week,is this ok for dental care?
    ragi java,mosambi juice,dprotin powder with milk,resource diabetic wiyh water………….
    this is her diet….
    can i include nything else………..
    what to do about urinary infections?
    plz help me…………..

    • Syeeda, I am so sorry to hear about your situation.

      Though I am not a doctor and cannot give medical advice, I can definitely share whatever I know related to the situation you are in both from my experience and from what I’ve heard from other caregivers. I had emailed to you a few days ago with my contact details in case you are interested in talking to me. If you have not got my email, you can send an email to me at cyber.swapnakishore@gmail.com

      Meanwhile, one quick thing: mouth care is a very important component of care for persons in this stage, and dental hygiene is very important. I’m not sure what else you are doing for this in addition to brushing the teeth…once a week seems very low if that is the only way you are cleaning her teeth. I suggest you contact me and we can talk about the various points you have mentioned above…

  7. Lora Ellis says:

    Swapna, thank you for your post concerning your mother, and I am sorry for your loss.

    Your situation with your mother is almost exactly the same as my situation with my mother. She has been bedridden for just a year now, and she also has dementia. She therefore forgets that she can not walk and has tried to get out of bed twice now. I moved into my mom’s home 3 1/2 years ago as I could see the progression of dementia. I literally quit my job, sold my things and moved 250 miles to be with mom. I have been blessed to have this time with her.

    I also didn’t understand that it was time for mom to be bedridden. I think it was harder on me than her. I guess being bedridden meant to me that this was another loss in mom’s journey. But, like you said, my mom is happier than she has ever been. She still laughs at times and I have had a chance to just sit and talk to mom. I talk, she listens.

    I thank you for you posting you and your mom’s story as it has helped me realize I am not alone in this situation. Our journey will continue until it is time for mom to pass away and until then I have time to be with her.


    • Thank you for sharing your story with us, Lora. I’m sure your action will also help others see they are not alone in such experiences, and I hope your journey through this phase of caregiving will be peaceful and fulfilling to the extent possible while facing the loss that is inevitable….

  8. Thomas says:

    Swapna, I sent you an email today thanking you for your writing. I am sorry about you losing your mother. I have appreciated the comments of others on this blog, learning that many of us are providing caregiving and that there is joy along with the loss and the work.

  9. Harriette Rost says:

    Swapna, I too appreciate your story – more than you know! My husband was bed ridden for 5 1/2 years because of a massive stroke, leaving him quadriplegic, couldn’t talk, and couldn’t swallow. Caring for him was so strenuous; he was a huge man and so heavy to turn. I invented a product called the Tomi Turn! You can see my story on TRostCorporation.com. I could easily turn him, pull him up by myself and keep my back in great condition. I empathize with caregivers caring for loved ones. My love to all of them out there!

  10. madhuri says:

    you are a wonderful person. Who not only took care of your mom but also shared your feelings. Your mom is blessed to have a daughter like you.

  11. Rakki says:

    Dear Swapna

    Frankly understood that what you faced cause now I am facing this same situation and even my mum even didn’t speak a single word. It is a very critical situation that facing but I taje easy that how many of will get a get chance to seva for mum & very lucky to serve for my mum. thank so much for sharing.
    Be strong.. & I believe that I could do it.
    God bless you
    Thanks again

  12. Ronna Allen says:

    Thank you for your story. My mother is in late stage dementia and is almost completely bedridden. Most of the time I can’t even understand what she is saying. Like you, we have a hospital bed….don’t know what we would do without it….and I am learning how to care for her better. I have a wonderful care giver that God led me to find that helps me and I pray we are doing everything we can for her. I am trying. It is hard. I miss the person my mother used to be and I am trying to come to terms with who she is now.

  13. GAYATRI Fabian says:

    Sapna- I experienced this too with my Mother in law, Who is now in Heaven. Thank you for sharing your experience. God bless.

  14. onpointacupunctureuk says:

    Thank you for sharing, my grandmother has recently become bed ridden.

  15. Kevin says:

    I cared for my grandparents. My grandfather had a long battle with Alzheimer while my grandmother lived 4 years longer with 2 pretty good years & then she got small cell lung cancer yet didn’t smoke. I gave up my job & college potential in my late teens to care for my grandfather. He died at home when I was 28. I had cared for him 10 years. His son, my father wouldn’t & my grandmother couldn’t yet she did help a good deal during the day hours. I went out to visit a friend Tuesday nights. We would watch 2 movies. I was gone about 5 hours 7p to 12am. That was my only real time off! My grandfather in early years wasn’t bedridden. He was getting out of the house at 2am if I was perhaps using restroom. He would be gone fast, out in his underwear pounding on the hoods of cars or something crazy. I would get him back in. We later had deadbolts on doors so he couldn’t get out but he was violent about 3 years so those were hard years. It was last 2 he was fully bedridden. It wasn’t easy to care for him but not as hard as it had been. I got through it.

    There was a 2 year break. I went to real estate school, past my State exam & had become a broker. I was finally working for pay. Just as things started to get good for me, my grandmother got sick. It was same thing, nursing home or I care for her. I wasn’t going to let a family member go into a nursing home for people with no real money. I quit my career and cared for her 18 months until she too died in hospital. Then came a family battle. I inherited the house after years of loving and caring for my grandparents. I hadn’t done it for that reason & they had saved 20k in over 50 years marriage so they had very little. The house wasn’t worth a whole lot. 65k but it was paid for. I then had 4 years after in bed with depression over the loss. I worked, was getting by since I had no mortgage and doing okay until I too got sick with MS! I had no medical insurance. I was still pretty young but then came medical bills. I lost the house, went into bankruptcy and am now living on just over 700 a month disability in a rundown apartment. I am in total poverty because of my illness and choices to care for loved ones. It has been hard. I am in my 50s now but I have no regrets over any of it. Caring for loved ones is the great thing to do. Older people or children need caring for. Families should provide it together when possible instead of dumping people. To dump a loved on in a nursing home is not love. Remember, you too might be bedridden one day and hope someone you love cares for you. I have no one to care for me and am in bed most of the time yet I can make it to the bathroom and of course use a laptop some of the time. Other times I am in pain and it is hard to even turn yet no one is hear caring for me because I am poor. I had a service a while but when you are poor, you are better off alone than with what you end up with so forget social services as the social worker might be very nice but what you get for in person care isn’t usually good. They do nothing but steal and watch TV. I was in hospital last year from dehydration per one of those services. The woman hadn’t even brought me a glass of water those 3 days a week she came out!

  16. Debo says:

    Thank you for writing a beautiful level of what it is to care for a bedridden dementia family member .Your grace and courage is greatly appreciated. I wish you all the blessing life can give. Thank you again!

  17. L K says:

    I disagree fully with this. Good for you to see the silver lining. If this was your mother in law, would you feel the same? My mother in law doesn’t have dimentia. She chooses to lay in bed and be incontinent. I hate every day of it. Often wondering if I’m in Hell. My husband is an only child and has just become an alcoholic.

    • Hmm…. Frankly, I was not trying to see a silver lining at all; fate brought me to a point where I had to do something and I did it. It was not fun. And I don’t know what I would have thought or done if my mother chose to lie in bed while she was capable of doing her own work; as is clear above, in my mother’s case it was a disease and not her choice. She was a very independent person and when the disease brought her to a point where she started needing help, she took a long time accepting that she needs help. Initially, she hated being dependent for anything.

      I do not know what makes your mother-in-law stay in bed, and I assume you have done any required mental and physical checkups to rule out diseases or possible causes like depression to make the assertion that she is choosing to stay in bed. if you haven’t done so, please do consider checking whether she has depression; I’ve known some people who were just staying inactive and in bed for no apparent reason, and it turned out to be depression and they improved and became active after treatment.

      To answer your question, we all have our own lives and things we want to do, and I would definitely not feel nice about taking care for someone who was deliberately increasing dependence on me when they are capable of doing their own work. It must be very frustrating for you to have to face situations others have chosen and have to live with them day in and day out, so I understand your anger. Hope things improve…

  18. Hajira Mahomed says:

    Hi Swapna,

    Found your story while trawling the internet on how to care of a bedridden person. My maternal aunt of 74 is bedridden and has no children so I am now taking care of her. Its comforting to know that others experience what I am now. Thank you so much for your story……all is not lost and we go on.

    God bless.

    • Good to hear from you, Hajira. And nice to know that you found it useful to hear the experiences of others in similar situations. Best wishes for your caregiving journey

  19. Anne Gal says:

    You are a loving and caring daughter. I especially feel the same way when you mention that during this difficult time, you are receiving more love from your mother than ever before. It is a chance to feel close to her and take care of her as she did when you were a baby

  20. whiskymist says:

    This is a very moving and beautiful account of the love between you and your mother. My father has become bedridden in the last two months after a massive stroke and I can already feel what you have lived through.

  21. Swami Krishna says:

    May her soul rest in peace

  22. mandm23 says:

    Thank you, thank you, thank you for your very helpful words. You and anyone who helped you care for your mother will be blessed on earth and in heaven. Reading your words here today have set things more clearly in my mind, so I may be more of a help to my mother and myself. God bless you!

  23. Alyce says:

    Thanks for sharing this. I can relate allot to your experience. My mum has dementia and it appears she is about to become bedridden. She has not been able to get on her feet the last couple of days. All I want to do is make her feel as comfortable and safe as possible and keep her at home. Alyce from Australia 😀

  24. Mary Elbissouri says:

    I am really sorry to all the people who go through this with a loved one. It is heartbreaking to watch them deteriorate. May I add I completely understand you wanting to think whatever your mother had was not dementia and something else. It’s hard to come to grips with that fact. No one wants to think their loved ones have dementia. Same thing holds true tor cancer. Some people think it’s just back or rib pain or a slipped disk when in fact it’s a tumor or a mass and it’s cancer. It’s not your fault for not wanting to catch on in the beginning. Completely understandable.

    • Jaye says:

      Im doing it by myself no family no Carers two years now. My dads mobility is almosr at zero and the incontinence is honestly driving me in to depression . I love him but im tired now. He lived his life very solitary theres no one to vist or interact with him but me. I moved hin into my home one yeae ago it was impossible to travel every day to care for him .i regret this my home and life has changed not to mention my health and finances .hes is a lovely man always has been sad situation

  25. Christine Crow says:

    Thank you for sharing your experience. My Mother is now bedridden from her stage 4 chemo therapy treatment. It was just too much for her aged body to handle. God bless you always.

  26. Heidi says:

    My mom is currently in assisted living but is actually receiving nursing home services (we are paying for in-home caregivers to go to the home). She is also receiving hospice services, has dementia, and is completely bedridden. She only drinks a couple of boost type drinks daily and water. Unfortunately, the facility has said we need to move her out. In phoning numerous nursing homes, I’m finding few have openings, or the ones that do, aren’t places I’d want to put a loved one. I’ve thought about bringing my mom to live with me, husband and adult daughter with autism who lives with us. I’m just not sure I can do the diaper thing and worry about being resentful about being tied to the house 24/7 (or thereabouts). I have great admiration for anyone who does do that. I love my mom dearly but just don’t know if I’m “up to the task” (or my husband for that matter, as I would need his help to move her, etc). What if I move her into my home and I realize it isn’t working?

  27. Anagha S says:

    I’m 16 years old and helping my mom take care of her bedridden mother (my maternal grandmother). My grandma doesn’t have dementia but she’s still unable to get out of bed for the same reasons listed above. I bumped upon this article while searching for liquid diets for my grandma. Truly well-written. Whatever I wish to say to anyone who pities grandma or my Amma is written here. Although everything from sitting her up to feed her, dealing with her tantrums when she hates the food, changing diapers etc are difficult, the smile she gives in turn is a blessing.

  28. Michelle Pereira says:

    I so relate to ever word you shared, My mum is now bed ridded for over four years , as much as it gets tiring and sometimes stress full ,i still enjoy every moment i have with her. She has moved from a mother to now being our little baby. its like taking care of a child . Every word she says even the facial expressions is something the family takes joy in sharing with each other. there is so much i have learned in these years.
    I thank God that she is so peaceful and like our sleeping beauty so calm n relaxed.
    me and my sisters consider this time to give back to her the little we can for all she has done for us in our lives.
    God Bless you too

  29. Arthur Johnson says:

    I came across your blog accidentally while looking for advice on bedridden patient. My wife and I are both aged 86. She has had vascular dementia for two years and I am her sole carer – but I have help from an outside firm, to change her pad and bathe her. I was touched and impressed by your courage and love for your mother. I know how it must have felt for you. God bless you.

  30. Duvvuri Murali Mohan says:

    My mother age is 80years she in bedredden since 2 months. She is talking food with liquid form rice with butter milk daily 1 time and in the afternoon as nobody stays in the house she is alone after I came from the office I used to give coconut water and drinking water twice till she sleeps. But from 2days onwards she is not opening her mouth for food and left hand is swelling. She is not able sit and one has to physically lift her to dressed.what should I do please let me know. I am a below middle class family. Please suggest me in this regard. Thank you my Mobile no is 8978091660

    • Please get your doctor to see what the problem is. It may be an injury or an illness, and may need treatment in addition to home nursing. A GP (like her normal doctor) should be able to give you some help and will let you know is more investigations are needed. If your city has an elder helpline, that may be able to suggest some people who can help.

  31. Lisa Martin says:

    So sorry to hear about your mum. Was she bedridden a total of 2 1/2 years?
    My mum is bedridden right now as well. She can no longer speak. Sleeps about 22 hours a day. She’s 6’ yet weights about 95 lbs. she does still eat decently.
    Would it be reasonable to think she could live another 2 years? I don’t think so. It I sister thinks she is just fine.
    Thank you in advance

    • Sigh! this is so difficult and heartbreaking for families. As for the duration, so much depends on multiple factors – other health conditions, overall deterioration, sudden decline/ infections/ injuries, emergencies. I’ve seen families where this journey was very short, and those where it went on for years. My own philosophy now is, take it a day at a time and be ready both ways, pace yourself emotionally and workwise so that there is less hurt and loss and fatigue whichever way it turns out….

  32. Varsha Rana says:

    We also in the same stage. My mother is also in the same stage we sisters caring for her. Now she is in worst position… helpless she and helpless we ….. just the proper care we can do… don’t know how much time she will be in this painful situation.

  33. Farhan says:

    I totally related to your post as I am going through a similar situation with my father. The issue with me is that I’m single and the only male other than my father. He is in such a bad state that I can’t even leave him to work which then has seriously impaired my financial condition. My father can’t move at all. ” karwat bhee nahee le saktay”. He rips the diaper to shreds within a short time. Then he has developed bed sores as well which I treat but they keep coming back. This has been going for a year now but his incapacitating has been a 4 year old thing. For the last 4 years every time he has gone to the bathroom to use the toilet or to bathe I’ve assisted him. My back my arm and my neck has developed chronic aches. I dunno I just took the opportunity to vent out some of the frustration. I pray nobody goes through this. Neither the patient nor the caregivers.

  34. SANDRA says:

    Thank you for sharing your story. My family & I are going through the same exact thing. God bless you💕

  35. Janey says:

    I’m 10 years late to this post, but I’ve been looking for information and personal stories on caring for someone with advanced dementia, as so much I find is for less advanced stages. Thanks for writing all this down and sharing it, it’s really nice to read about you holding her hand and her being happy in the moment. I’m not in India but I think stories like this are universal.

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