My mom is 78 this year and has Alzheimer’s for 13 years. She has had a slow decline going through all the stages and now she’s bedbound, doubly incontinent, can only say one or two words, cannot sit up, cannot feed herself, has to be spoon fed a soft diet. She grinds her teeth almost constantly and she’s stiffening up all over, all her muscles feel rigid.
She eats sooo much, she’s like a fish as soon as something is put to her face her mouth automatically opens so she eats and eats whatever is given to her. She never refuses.
She's had so many infections, skin breakdown, stroke like events yet she goes on and on. This is so hard to bear - she’s been at this end stage 7 for over 3 years now and there’s no end in sight. I feel so bad for saying it but I wish she’d stop eating, she’s gaining weight if anything and it’s not going to change anything. It’ll just mean she’ll go on and on and on for more years. It’s killing me to see her like this, please I just want peace for her.
Has anyone else felt like this? I feel so guilty.
Is mom on Hospice? Have you asked her doctor about that?
Is mom in a facility or at home?
Sorry for all the questions, but I'm trying to get a clearer picture.
My heart hurts for you.
No, I have not gone through what you are going through.
Im sorry she is going through this. I wish you weren’t.
Is your mom still in the NH? Is she being over fed? How often do you go to see her? Is she in pain? Does she recognize you?
I’m not sure what I would do in your place. I don’t pretend to know.
I can understand why you would want to hear from others who share your experience.
I do know that your life matters too.
I wish you great peace.
Hugs to you and your mom.
How do you know when a person is ready for hospice?
since then she’s settled but the carers seem to want to keep feeding her, all it does is prolong her misery. My heart is breaking for her so much and I feel guilty that I want her to pass. I can’t cope with the thought of another 3 years of this. It’s been 13 already.
I think the suggestion that you only visit here once a week instead of every other day makes good sense both for you and for her. If the nursing home is competent and looking after her well (or even too well with too much food), it is right that they should "get on with it," just as you "get on with your life." It does not appear that your regular visits have much impact on your mother or that she will miss you that much, if at all. Given her situation, if she is being looked after well, then your responsibility is essentially met.
My own experience with my wife, now 7 and a half years into Alzheimer's and also bed-bound and doubly incontinent, still happily at home, is that she is as at ease with the carers who come into our home as she is with me. The other day, she asked me, "What happened to my boyfriend?" I replied, "I am your boyfriend! We got married." She just said, "Oh," and was happy with my reply. I did not tell her we had been married for 56 years. As you will have learned, people at the more advanced stages of dementia are time travelers who move through their past lives with strange awareness of where they are at different times of the day or week.
I have found that the more I go out and leave the carers (or caregivers, as Americans say) to "get on with it," that enables me to go out, do other things and relax. The result is that I have more energy and ability to look after my wife when I am home. Certainly, life has its challenges, but as your mother is now in a nursing facility it is their responsibility to look after. Let them do it. Don't feel guilty and move ahead in your own life, doing what you want to do. Prayer also helps a lot.
She was so far gone, that when Hurricane Katrina hit, she thought the NH was taking all the “old folks” on a nice trip! She had no idea it was an evacuation due to a major storm.
Everyone talks about quality of life, but until we're in that state ourselves, we can only guess what our loved ones are feeling. I think that as far as nutrition goes, the progression of the disease makes it more and more difficult to process any intake into nutrients to be absorbed and utilized by the body. The immune system weakens and stress is put on all organs.
But we fed her until she no longer took any food in and hugged her and talked to her and told her that she mattered to us and that we loved her. My heart felt as if it were constantly breaking over and over, so I understand your pain.
It seems to last forever and yet ends so quickly. Tell your mother everything that you always wanted to say to her and take time to grieve away from her bedside.
Our cat couldn't get up anymore & I would bring her some water - then hubby & I decided it was time so I picked her up & cradled her in my arms then held a towel gently to her face - she stopped breathing peacefully - she died less than 20 feet from where she was born at age 16 with a sense of dignity
What I feel you are saying is that you wish your mom could go with some dignity because she has little now - by the way I miss my mom but I do not mourn her as I had pre-mourned her at every level of function she lost - you may feel the same way when her time comes so don't feel guilty when she does go & if all you feel is relief for the both of you
Don't be hard on your self. Your wishing and hoping that things would be over is normal. its not for you but for the one you love going thru it that makes you want to see her pain end.
don't be so hard on yourself. you are a wonderful person to be there for mom and mom might not be able to speak it but I believe that she thinks it every day.
love mom and enjoy the time she has left. even if its just holding her hand. she knows your there and loves you so much for that.
your in my prayers.
You are amazing! I’m caring for my mom with Parkinson’s. It’s hard. You also cared for your parents at the same time, whew!
She can remain at home , monitored by a medical team, support for you, and she'll be comfortable.
There is no reason for you to feel guilty. You want to see your mom released from
her body which is mostly shut down but still retains some reflexive functions like
eating. I doubt too whether she would want to remain trapped like this or wish you to suffer as well. I wish I knew what to say to help ease your suffering
This is exactly the scenario where we all wish we had more options not only for our parents but for ourselves when that time comes.
Best wishes to you, please take care of yourself!!!! It is very stressful to watch your parent decline so severely and slowly. ((((hugs))))
Love and Light, Kelly