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Old 06-07-2013, 09:27 PM   #1
Toni880
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Hello All

Hi everyone, just happened across this forum in an effort to seek answers, so joined. My mother in law is 79, diagnosed Advanced Alzheimers last year.We all knew something was up with mom for a very long time, but father in law was the family authoritarian and felt she was fine. He passed away 4 years ago and my husband and I have cared for mom since. The wheels of the NHS turn slow and it took us until last year to get her seen and formerly diagnosed. With that history out of the way my question is this...where are we at in the disease when the person starts walking sorta hunched over, legs bent a bit funny, when mom stands from sitting to walk, such as getting out of the car, its almost like she doesnt fully stand to walk, if this makes sense.Other things she does which are a bit odd, we have a commode in her room, she has now started not wiping, or if she does, she hides the toilet paper in very inventive places, instead of dropping in the commode.She still talks...she cant begin anything on her own, example...she used to do word circles allot..this year she cant at all, so we bought her colors and a coloring book....I have to shade each picture in for her to go over it, as she simply cant choose a color to use....she no longer comes up with ideas of her own,does not initiate conversation, but is very much aware of anything in our home such as us or our pets.She still eats very healthy amounts of food, but I have noticed more and more Im having to remind her to drink.I simply need to figure out a basic idea of where we are in these stages, and though I realize nobody but God knows a persons time to go....just trying to make sure an average of time left.My husband wants to take his mom camping...I think its not a very good idea, due to her constant need to wee, and also she wonders allot....any thoughts on taking her camping?

 
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Old 06-08-2013, 09:30 AM   #2
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Re: Hello All

Hi Toni,

I am sorry your MIL has advanced AD. Well, it looks like your MIL needs toileting help all the time. She has trouble walking or standing (gait issue) and so she may be better off using a cane.
Walking problem is part of Alzheimer's. Her brain cannot allow her to balance for walking so she needs a cane. It will take a long time to go downhill for walking. Maybe it will take 4 or 5 years before she needs a walker or wheelchair if it is late-onset Alzheimer's. (Early onset is faster.) Do ask the doctor to see if she needs a walker and etc. Assess her walking issue. Toileting trouble is part of Alzheimer's too. Please read a book about Alzheimer's to understand the symptoms. She may be in moderate stage and can get worse with any trauma.

If your family has done camping a lot, maybe she is used to it. But she will wander around and get lost. So it is a no no to go outside in the field... You need to be with her all the time so she doesn't get lost because she will be at loss in the big wilderness. A hotel or motel may be better so she has a room to get used to and you will have a bathroom to attend to her needs.
I don't camp a lot so I am thinking that something indoors like a cottage is better. But she will get lost a lot so you need to watch out for that. Don't leave her alone. Even if you have a trailer, she cannot go outside in the big park alone.
It may be too much work to watch her all the time for camping.

Overall, a short trip is better. Don't go anywhere that is exotic or difficult like camping or swimming.
By the way, she may be afraid of water and doesn't want to wash her hands and wipe her bottom in the bathroom so it is more trouble for you to go camping.
It is hard enough to go camping for the whole family, not to mention a demented person who is very confused.

Just my 2 cents,
Nina

Last edited by ninamarc; 06-08-2013 at 10:53 AM.

 
Old 06-08-2013, 12:03 PM   #3
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Re: Hello All

Also, she would scratch her mosquito bites a lot and may get the bites infected if there is any bite from camping. It is normal to have all kind of exposure outdoors.
For a person with moderate Alzheimer's, she would not understand how to care for the bites and instead she will scratch a lot later on.
To prevent it, it is safer not to take her camping. One outing to a garden or zoo may be OK but camping in the wild is not wise because you will have to pay lots of effort to watch her.
My late FIL had bug bites once or twice. One time he scratched it so hard and went to the ER for the infected bite. He had no idea he could not scratch the bites. He had moderate Alzheimer's at that time.

Your MIL also needs routines. She is used to routines so she would not be confused. If you need to go out with the whole family, you can find some caregiver to watch her at home. Or you can send her to respite care in some facility for a short time. If your husband thinks camping is good for his Mom, then I would say that it is not anymore. Don't worry that she may like camping - she won't know how to cope with it; there is no routine in camping.

Hugs,
Nina

Last edited by ninamarc; 06-10-2013 at 09:20 AM.

 
Old 06-08-2013, 05:36 PM   #4
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Re: Hello All

Toni... if MIL was diagnosed with Advanced Alzheimer's, then that is where she is. She is totally dependent for her care because she can not successfully do things for herself. Almost everything you commented on fits into this advanced stage. Know she is doing the best that she can.

As for time left, that is a question we all want to know. It is also a question impossible to answer. She is eating well which is a good thing. Is she maintaining her body weight? If she is eating and maintaining her body weight she could be with you for a longer time. If she is losing body weight then the time is usually shorter. Yet some infection or other medical event could come along and she might go quickly. Mom spent 4 years in the advanced stage, and I know others that have only spent months in the advanced stage... so it is truly impossible to tell.

Glad you decided to join us. I am also glad you finally have a diagnosis. Right now all you can do is try to enjoy the moments you have left with her and take each day one at a time

Love, deb

 
Old 06-10-2013, 09:28 AM   #5
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Re: Hello All

It is hard to say how long. There are 7 clinical stages for Alzheimer's. She may be in stage 5 or stage 6. It also depends on how you care for her. You do need to bring her lots of water and encourage her to drink. She would not understand why she needs water. It doesn't mean end stage. My late FIL didn't know how to reach for food in the kitchen in 2010, but he lived up to the summer 2012. The caregivers fed him well with pureed food. Your MIL seems to be OK in eating.
Walking issue depends on what she is using for help. If she has no cane or walker, for sure she cannot balance herself and stand on her own properly. She would not know it herself. You can ask the doctor to get a therapy to see how she can deal with her walking. The therapy won't cure her but it will allow you to see what kind of help she needs.
My late FIL had been on his cane for 3 years. He did have trouble to get off a car if the car was next to the curb. He needed all the help to get him off the car. My husband had to hold on to him basically to make sure he didn't fall before he reached the cane on the flat surface. My late FIL had been on a walker for 5 months and then he was in a wheelchair for 6 more months before he died in his sleep (stroke or heart attack) in the age of 92. At that time, he had stopped feeding himself for 3 months and the last week he was in bed a lot and could not eat much. He had stopped talking for a few months but he could make loud sounds to stop people from moving his legs on the wheelchair.

Perhaps your MIL is in late moderate stage. She depends on you guys to tell her what to do. She may not be talking too much now because she doesn't initiate it. It will take a long while to reach the end stage. Usually she would stop eating at end stage.

Hugs,
Nina

Last edited by ninamarc; 06-10-2013 at 09:42 AM.

 
Old 06-11-2013, 05:30 AM   #6
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Re: Hello All

Thanks to everyone who replied, to answer on question you asked....she has a great appetite and is NOT gaining weight, rather she is becoming quite thin. To the person concerning camping, I would never leave mom unattended ANYWHERE, especially when we are in unfamiliar places. I think a can or walker is a great idea, though in moms situation I feel quite a waste, as she would never remember to use it, or actually want to, we are STILL trying to convince her about the hearing aid we bought her 3 years ago. Mom was an extremely beautiful and well brought up lady in her day, and also a schooled dancer from age 4, some of the top dance troops in Europe wanted her....so with stage life came a thought pattern I cant get past which is Vanity. If it makes her look old or fragile in any way she doesn't want the item, refuses to use it ect. She thinks she is my age and Im her female pal....it shocks her every time she sees herself in a mirror, so we cut down on mirrors as this was severely depressing her. She physically has only one major problem which is, severe constipation, caused by according to her GP fecal retention, which they suspect has been a lifetime habit for her based on her past medical records.She literally will not have a BM unless I coach her through every step of how to actually have one, which I do once every other day as she never goes any more often than that.Drinks are encouraged by having lots to hand for her throughout the day and constant reminder that not on is it there, but also that it is hers. We have now entered a funny stage concerning food in which anything white and soft looking must be dessert, such as cole slaw,potato salad,mash potato...anything looking like this in a little heap on the plate gets put aside for later as she "doesn't want her dessert right now"...Its no big deal....just an observation Ive made. She has always been an early riser...lately she sleeps and sleeps, I encourage her to get up, but feel its wrong to force anyone to do anything they dont wish to. Anyhow...thanks for replying to my post...and nice to meet you all.

 
Old 06-11-2013, 11:45 AM   #7
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Re: Hello All

Toni,

If she has balance issue, it is better to have a cane and walker. She is not used to it so she doesn't go for it. Later on, she may find that a cane helps her walking. Don't leave it up to her to decide. If you give her the cane yourself, she will get it for outing. You need to tell her to do that in the beginning until she is used to it.

Try prune juice - this can reduce constipation. Also the person with Alzheimer's tends to like desserts only in late stage. Maybe she expects desserts like puddings and etc. It is normal if she comes up with some funny thoughts about the food. Maybe she just likes desserts. It is OK. Maybe she wants pureed food to make it easier to swallow. Also, the beginning part of eating issue is swallowing issue. Tough food is hard to swallow.
For sure you won't leave her alone but you will never know for sure if she will disappear in a second overnight and etc. Sometimes unexpectedly she would wander out unless you lock all the doors and block the stairway and etc. You cannot be there 24/7. I mean 24/7, not even for one short time. In general, for regular routine, she could stay home for meal and not going out. Sometimes if she is bored, she may want to go out herself. If she doesn't like anything you do, she would get upset and walk out. It is not about you not watching. It is just tricky.

If she is bored, she may sleep more. Maybe she doesn't know it is day time. Perhaps you can try some day care center so she can do some activities.
It is hard to know her stage online, so I can only tell you the general picture.
If you feel you can go camping with her, it is up to you for sure, but it is lots of work. Lots of surprises from her too. You will never know how she will react.
Sometimes she doesn't know herself anymore, so it is wise to remove the mirrors.
Let her be. She thinks she is young, it is fine. You can validate her feelings without any harm. Let her feel this way so she is content.

Hugs,
Nina

Last edited by ninamarc; 06-11-2013 at 11:47 AM.

 
Old 06-12-2013, 11:06 AM   #8
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Re: Hello All

Toni... you are exactly right about the walker or cane. Owning them doesn't solve anything... and they tend to forget to use them. Vanity is also a huge problem. It says "old" and they don't see themselves that way. There is another problem with walkers in particular. They can become more of a hazard than a benefit unless used correctly. Sounds simple enough until you understand that someone with dementia can not "learn" how to use them or use good judgement in using them. Instead of helping them balance and stay safe, them become a trip hazard and get in the way. Dad went through PT four times to learn how to safely use a walker and never mastered it. I was grateful to the therapist for not just giving him a walker. My FIL got himself a walker and ended up falling over it and breaking his neck.

What you are seeing related to mirrors is very common. Mom's image would startle her. Later she would talk to that person in the mirror as if it was somebody in the room. For Dad that person in the mirror was a scary dangerous old man that had invaded his room. Removing or covering mirrors, if they are disturbing, is a good idea.

Constipation is also a typical problem. Hydration is critical. Stool softeners can also help. Toileting is also important. They may forget where and how to go so if you will sit them on the toilet sometimes it will encourage them to go. It also helps to warm the prune juice, or let them eat prunes (pitless) for snacks. The eating with no weight gain is also typical. Mom eats enough but her body is not able to extract the necessary calories from the foods eaten. There is nothing you can do about this. It is actually called "Failure to Thrive". Just try to calorie pack with high caloric foods.

I smiled with the "white food" being dessert. I would be up to my old tricks. A little green food color should fix that. Mom wanted to eat her dessert first so I would add sugar to the cole slaw... sweet dessert She definitely preferred sweet so I sprinkled sugar over all sorts of foods. She didn't like the consistency of broccoli or cauliflower so I pureed them with a little butter and milk. Work with the color and consistency of food as well as the taste until you hit the jack pot. I could put anything in Dad's scrambled eggs and he would eat it! Be creative

It does sound like you have a good attitude and are being creative in her care. Each day is different and you just have to figure out in the moment what works best. Nobody knows your Mom better than you do. Use that past history to understand what is going on now.

Cute story.... A lady at Mom's facility would ask every morning "Where is Betsy?" Staff and other family members would give her the stock answers. Betsy is at work, on vacation, out to dinner... etc. She would always look at us as if we were NUTS! One of the care managers finally ask a family member who Betsy was.... it was a milk cow the lady had early in life. She wanted to be sure it was being milked and not out enjoying a 4 star dinner!

Love, deb

 
Old 06-12-2013, 11:58 AM   #9
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Re: Hello All

It is true that walkers are dangerous sometimes. However, my late FIL had moderate stage at that time so the cane itself worked very well so he had had it for 3 years.
The walker was tricky but there were always some caregivers next to him so he never fell due to the walker. (He fell due to his own balance issue.) Later on when he could no longer use the walker, he switched to the wheelchair. He tried to get out of the chair but he couldn't so he got used to it. The only issue is we could not tell him to move his legs to move the chair. He listened to the caregiver in the memory unit so he moved his legs for them, not for us.

It is a good point. You need to observe to see if MIL can use it on her own. If she falls on the device, it is a no no to use it. Someone has to be next to her.

Hugs,
Nina

Last edited by ninamarc; 06-12-2013 at 11:59 AM.

 
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