new and confused and totally in the dark

Discussion in 'ARCHIVE FORUM: Support discussions' started by citybythesea, Mar 23, 2008.

  1. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    coast of texas
    [I am new to this board and have been a caregiver for the past 5 years. Right now I am trying to find out a little more about the last stages. MOm is in stage 7 and it is severe. She had not wanted to be in a nursing home so she lives with me. She has gotten to the point that she constantly goes in and out of a state of sleep and just being there. When she sleeps she sleeps with her mouth open so as to the point that her stomache is distended. As of lately I diligently right down every portion of food or liquid she takes. I do this so I can tell if she is getting enough to have a bowel or bladder movement, since she has severely decreased this in the past few days. I was wondering if anyone has gone thu this. The nurses tell me and I have read where AD is a cruel disease that eventually takes all. I understand the motor skills and the movement of arms and legs...but does it eventually just shut down on the organs or is this because she is just at the point that we are having to feed her baby food and pray we get to a 1000 calories plus liquid these days. The DR.s are not willing to talk about the final days as they say everyone is different. It pains me so to see her this way. Short of an IV I know that she will probably never be well and the IV was something she would not want as it would be equivalant to life support. I just wonder each day what else will happen that will start a new chapter. I was just wondering if anyone had any ideas. and tt sheFONT="Arial"][/FONT]
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    #2 Grannie G, Mar 23, 2008
    Last edited: Mar 24, 2008
    No I`m not yet where you are but I have to admire the care you are giving. It must be exhausting for you.

    It never fails to amaze me how people in the final stages still have a fairly healthy appetite. However I understand your mother`s doctors not wishing to commit themselves as many cared for lose their appetite and their ability to chew and swallow.

    There are many on this Forum who have nursed their nearest through the final stages. It is 11.50pm in the UK now, so you are more likely to get some answers tomorrow.

    Take care xx
  3. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    coast of texas
    Thank you for the reply. I did not realize it was so late in the UK as it is only 7:00 pm here. Your reply is a hug and I wish you all the hugs possibly for you and your special one.

  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Please don`t stop posting just because of the time difference. We have members in the USA, Canada, and Australia who all post in their own time zone.

    They are all friends.

    Love xx
  5. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Dear Nancy,

    I don't have experience of this via Alzheimers, but my dad had stomach cancer, and he lived for 30 months on 1,000 calories a day. He simply couldn't eat food (the stomach wouldn't fit it in), so he tried the high calorie (protein) drinks and didn't like them, but he still lived for 30 months. Try some of these drinks (but get your doctor to prescribe if possible, they cost a fortune in the UK).

    I have not heard that Alzheimer's itself shuts down the body, I think the person just does not have any appetite, so I would try tempting your mum with anything she might fancy, and do not worry about its normal health properties. I am reasonably fit, but when I am stressed my appetite disappears. I eat small meals frequently (I often can't eat a full dinner), cheese on toast, an omelette with ham and onions, soup (I love soups - vegetables will help with the bowels, lentil soup is full of protein as well) with bread dunked in and a sprinkling of cheese on top, yogurts, trifle, banana and custard, banana and ice cream, fruit juices will also help with the bowels. Things like bran are probably too heavy, try porridge with a spoon of jam, brown bread toast and honey, scrambled eggs (maybe with tomatoes and cheese), fresh fruit salad and yoghurt or cream even (don't worry now about cholesterol). Anything your mum fancies, basically, that will keep her going. Even a bar of chocolate has some protein and of course calories. Cups of milky coffee. Protein and calories. Dried fruits for Vitamin C as well as fibre, apricots, sultanas, peaches. Nibbled throughout the day. Avoid nuts, great for young people but could cause choking in the elderly.

    "Empty" calories in a glass of sherry or port. Not allowed to suggest that nowadays! But they ARE calories and if your mum enjoys a drink, why not?

    But you can also get powders to mix with foods to add calories and vitamins/minerals, I have forgotten what they are called, but you can stir a spoonful into a cup of coffee, or a tablespoon into a bowl of soup.

    I do hope this helps, I went through it very thoroughly when my dad was ill. Forget the normal dinner of meat and two veg, but I don't think you have to resort entirely to baby food. Though it is probably a lot of effort on your part. But you can buy vegetable soup in cans, never mind the extra salt they might contain, it won't do your mum any harm for a short while I would think.

    Let us know how you go on. I am sure others on this site will have much better ideas than I have.


  6. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    coast of texas
    the reason we have gone entirely right now to babyfood is that she seems to have forgotten how to chew and swallow. As for the rest of your ideas I have used that as the basis for getting her to eat before this happened. The nutritional supplements you talk of are pricey in the US also, but they do quite well also. I have been lucky to maintain her in a bed bound state for the last 6 months at a healthy weight of 100lbs. i know that does not sound like much but it is a weight her dr's have been happy with tho they did not particularly like to hear of the Ice Cream Sundaes as a whole cream (dairy, protein) peanuts(protein) fresh fruit and chocolate syrup..I had a hard time convincing him the chocolate syrup was beneficial, but he agreed that when made right even junk food can be healthy.
  7. Maryav

    Maryav Registered User

    Mar 23, 2008
    South Wales
    dietry worries

    Hi there,
    I'm new to this as well and read your message with interest. I dont know what stage my MIL is but the eating situation seems quite similar. Have a llok at some os the replies to my plea under dementia and nutrition. I am going to get a liquidiser and intend giving Betty more soups and smaller portions more often during the day. Most of all though I am diffinately going to try to stop feeling stressed about it as I can see that my stress about Betty's eating was adding to the problem.
    Take care
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Actually, all the dementias can progress to the point where eating and swallowing are forgotten. I think it's not such a well known symptom because many people succumb to other illnesses before the lack of calories becomes fatal. Specifically, when the swallowing reflex starts to disappear, many people end up aspirating food and/or liquids into the lungs, pneumonia results, and that's what ends up being listed as a cause of death. Really though, it's the progressive dementia and the failure to swallow that cause the pneumonia.

    I'm guessing that your doctor doesn't have a great deal of experience with the elderly dementia sufferer if it was so difficult to persuade him that all/any calories are a good thing when it comes to this time.

    Have you tried adding whey or soy protein powder to the babyfood? If you try that route I would suggest the unflavored, unsweetened versions - I buy a generic version from my local grocery store that is around $14 for a 16oz tin. In theory, a serving is 1 ounce, but that would give 24g of protein, so you might want to reduce the amount.
  9. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    coast of texas
    thank you for the idea of protein powders, i do have them at home already. This morning the nurse was here and I was able to show her how moms had become bloated and we talked..she has been going downhill for the past few weeks. Over the weekend I would change her but when her diaper did not need it the only way I was manipulating her was through her arms and legaas and a little to the side. Well lo and behold this morning we changed a dressing on her buttock and had to fully put her on her side and really put her through more than one wants to put a person thru. To make a long story short the pressure of her being on her side forced her to urinate and have another bowel movement...even with the little amount she is eating and drinking for me. She has sent her progress notes to the dr. and we are awaiting to see what they think. The nurse and common sense tells me her stomache had bloated because of the air intake from the way she breathes thru her mouth and the lack of extreme stimulation just let her bowel and bladder become lazy ..As for the Dr. not being around many AD patients..yes that is true. WE live in an area saturated with retireees and trying to get in with a dr. is almost impossible..she is new and while I do not necessarily always agree with taking on a fresh dr. she is easier to get in with and is more caring. When she is in a quandery she has a mentor dr. she talks to and has consulted him several times. He too tho will not say exactly what we are up against because AD is so broad spectrum in what a person dies from....but he does not hesitate to put AD on the death certificate when they get the complications and leave us. What he told me then was that this is a disease that we must come to terms with and know it is in our genes. To say a AD patient died of pneumonia to him is to deny the future family serious knowledge of there medical history.
  10. hendy

    hendy Registered User

    Feb 20, 2008
    West Yorkshire
    #10 hendy, Mar 24, 2008
    Last edited: Mar 25, 2008
    Hi Nancy
    You have raised an interesting point about the complications of dementia at the very late stages. Its difficult to come to terms with the end stages of the disease. On TP we all care for loved ones at different stages of their decline. My dad is advanced in his dementia, and although it is scary to me, I feel that when people share their experiences such as yours, it helps me understand Dads condition much more.
    You're right, caring is lonely, I hope you can find friends on this site.
    Take care
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    My mother not in your mother stage , so I can't offer any advice, So just like to Welcome you to TP as your find lots of support

    I must say I do agree when you say the above , as lots of doctor do not put the on the death certificate that the person death was brought on from having AZ .

    I wonder why ?
  12. May

    May Registered User

    Oct 15, 2005
    Hi Welcome to TP

    My Mum is in a nursing home, and probably by the sound of it at the same stage as yours. She has trouble with chewing and occasionally swallowing. She is fed by pureeing the ordinary meals they have. if she doesn't eat she is given Fortisip ('meal in a glass' type stuff). The other thing the home do are fruit smoothies, banana and strawberry is a particular favourite. We take in treats ( usually soft puddings) to try and tempt her, figuring that at this stage in the game it doesn't matter what she's eating, as long as she's taking something in! ( and besides... she does love sweet things :))I think anything that you can give your Mom that she will take is good, you sound like you are doing a fantastic job of caring at home, I take my hat off to you and send very best wishes for you and yours.
    Take care.

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