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Old 03-25-2013, 01:24 PM   #1
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Some days are diamonds... help!

Hi all: new to the boards and really need support. I will be happy to help and talk to people along the way as well.
Mum just got into a long term care facility last week. She was diagnosed with vascular dementia late last year and we agreed she needed to be in LTC as soon as possible. She's been at home with 24 hour care for the last three months.
My Dad has been with her all the way and continues to be, although I worry he is very worn out.
Will visit one day she's in pain, (parkinsons type symptoms) and in tears, spends the day in an awful state. She does have a few other physical issues.
Next day she doesn't remember the pain at all. (which is good for her)
How do we prepare for the fact every day is so different?

thanks all

 
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Old 03-25-2013, 07:58 PM   #2
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Re: Some days are diamonds...help!

Busychick, you take it for what it is. Yes, there are going to be good days and not so good days. It is an up and down roller coaster. Each day is different and it is impossible to know exactly what to expect. There is not much you can do to change this. Once you understand this you can alter your thinking. Instead of dreading each visit because it might be bad you need to expect the good and be prepared for whatever comes your way. I would walk in thinking... "I am not sure what today will bring but I can handle this!" That is the point. No matter what you get each time you are there... you CAN handle it.

I am truly sorry that your Mom is going through this. I am sure you and your Dad are both exhausted. Please remember to take care of yourself and be sure your Dad does the same. This is not a sprint but a long marathon and you have to pace yourself.

If she is having physical pain please talk to her doctor. Pain can e controlled. If it is emotional pain you still need to talk to her doctor. This can also be controlled. It is difficult to know exactly what is going on because those with dementia can not tell you, but use your intuition and non verbal signs to determine what is going on... and please be sure to talk to her doctor about any symptoms you see.

Vent away, ask for help, and know that support is close by

Love, deb

 
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Old 03-25-2013, 08:22 PM   #3
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Re: Some days are diamonds...help!

Just always make her feel loved and that you are always there to support her all the way.

 
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Old 03-26-2013, 04:18 AM   #4
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Smile Re: Some days are diamonds...help!

Thank you so much for your help! One day at a time. Much appreciated.

 
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Old 03-26-2013, 08:30 AM   #5
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Re: Some days are diamonds... help!

It helps to know the disease's nature. The more you understand about it, the more you accept the situation. Mom would not remember about the mornings or yesterdays. Her situation goes with the moment. Deal with it moment by moment. Cherish what is left with Mom. This is your quality time with Mom.

Hugs,
Nina

 
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Old 03-26-2013, 08:35 AM   #6
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Re: Some days are diamonds... help!

thanks again, I have so many questions. I guess she also needs to settle into the LTC home as well. It's so scary.

 
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Old 03-26-2013, 08:47 AM   #7
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Re: Some days are diamonds... help!

It is true that she needs to get used to LTC. She just moved and is disoriented and she is looking for her home. Also, please note that when she wants to "go home", it may not be the physical home she had before. She just doesn't know where she is. Try to eat with her and have activities with her so she can learn to like it with you. Help her to eat with the residents. Get to know them. She is in pain sometimes so maybe you should ask for a better pain killer to relieve her pain. Comfort care is the key at this point. Don't be scared. Talk to the directors often to keep yourself updated.

Hugs,
Nina

 
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Old 03-26-2013, 08:59 AM   #8
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Re: Some days are diamonds... help!

thanks Nina. At this stage she still remembers us and where she is, and wants to go home on weekends, which just isn't possible. Some days she's sitting up in bed or in her wheelchair (she is not mobile at all) and able to chat and watch tv and make conversations. She does not remember yesterday or time frames or the days of the week. She is able to make phone calls some days to relatives and remembers the number. Other days, she is not cognizant of anything except her discomfort. I gather this is what happens?

 
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Old 03-26-2013, 09:09 AM   #9
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Re: Some days are diamonds... help!

It is surprising. In the beginning, Mom would be on and off. In my experience (my late FIL had Alzheimer's up to severe stage last year,) they never forget 100% but the details will be more blurring. He forgot his elder son and his own house in late moderate stage. We all thought he forgot how to call but one day he was mad at home and picked up the phone list of all friends and began to dial it one by one. He had no concept where they were. So the neighbor he called came up to see what is going on. My late FIL was embarrassed and apologized to him. He just didn't believe the caregiver said that we were coming that night. He didn't have any concept about timing so he thought the caregiver was fooling him. I think deep in his mind, he remembered certain things but didn't have the clear picture of his family and etc.
Sometimes it is like the "light is on" and he would talk very well...
You can still talk to Mom now and it is good. Take her out for a ride in the home and go around to see the residents and get to know them. Maybe you can set up some programs for her to do on the weekends in the home.
Sometimes you may take her out but I hope she would come back. It depends on the case.

Hugs,
Nina

Last edited by ninamarc; 03-26-2013 at 09:11 AM.

 
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Old 03-26-2013, 11:06 AM   #10
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Re: Some days are diamonds... help!

Yes Busychick, this is exactly what happens. It is difficult to impossible for them to make new memories. They will not remember what they had for breakfast or if you were there last night. But the long term memories will remain for a while. That is why they can pull out phone numbers. These are probably phone numbers that they have dialed for years. In a good moment these numbers will come to them. Yet a new number is lost. There are days they will grab the phone and make a call with no problem, as long as it is a phone they are familiar with. Other days they will grab the TV remote and try to make a call. This is why many are unable to use cell phones.

Mom always remembered who I was even when she was unable to call me by name looking at my current face. Many times she talked about me. She did not recognize me because I was the wrong age. In her memory I was a toddler or a teenager. One day she even looked at me and said... "If Deb was here she would know what to do!" I did find out that is I would stand behind her, where she could not see me, and speak to her, many times she would actually call my name. It is not that they "forget you" but they put you in a different time and place.

Time frame does go away. Minutes can seem like hours or seconds. What happened long ago may seem like yesterday. You just need to go where they are because they can not come to you. I took a trip and was out of town for two weeks. When I returned, my parents had no clue I had been gone that long. They talked to me as if I was there yesterday and I did the same. I never corrected them. Another day I went to talk to their care manager and came back minutes later. My dad was furious because I had not been by to see him in so long! I apologized and assured him it would not happen again. That satisfied him

Yes, it will take time for Mom to adjust to her new surroundings. Remember, she has difficulties forming new memories. This limits her ability to adjust and learn her way around. Imagine waking up each morning in a place that you do not know. You have no idea how you got there or who these people are that want her to do things that she might just feel uncomfortable doing. They are changing her, taking her clothes off, and bathing her. We all need a sense of security, comfort, and safety. This is difficult for those with dementia, especially in a new place. In time, she will slowly adjust, but it takes a lot longer than it does for you and I.

One day at a time. Be in the moment with her. Try to understand where she is and how her mind is working now. Find moments of joy with her that will carry you through. Bring a smile with you.

love, deb

 
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Old 03-26-2013, 11:27 AM   #11
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Re: Some days are diamonds... help!

it's already clear to me you all are amazing people! thanks again for your help I'll read this and re-read to try to get this into my own head. so emotional. thanks again!

 
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Old 03-26-2013, 11:58 AM   #12
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Re: Some days are diamonds... help!

Busychick, know that it does get easier as you learn about the disease and what to expect. The unknown is what rattles us. Yes, this is a sad disease that takes our loved ones a bit at a time until there is nothing left. No, there is no effective treatment or cure. But there is time to make new memories, enjoy moments that are left, and find a new dimension in our relationship with our loved ones. We miss the loved one we knew but we can create a new relationship that in many cases can be more rewarding. Instead of just a quick check in on the phone, you actually take the time to go sit with Mom, listen to her, talk to her, and enjoy her presence. You will find your new place with Mom if you look for it.

Thought process is so important that I must mention it again. We tend to look at the worst. Mom will never, I can never, we will never... all things we say. In reality... Mom will be who she is. You will learn to deal with her as she is. The two of you can find a place of comfort and peace to enjoy each other. This disease is horrible and the worst thing that could happen. Instead tell yourself that it is not what your or Mom wanted but you will figure out a way to deal with it. We are resilient and can do so much more than we know we can. It looks daunting in the beginning but we all find a way to do what needs to be done. I have faith in you Have a faith in yourself.

Love, deb

 
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Old 03-27-2013, 08:53 AM   #13
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Re: Some days are diamonds... help!

Talked to my Dad today and my Mum is now being tested for Parkinsons as well as other things. Pain control is happening too more than before. I am now prepared to expect whatever may come when I go to visit her. I know now I can't really prepare so I'll go with the flow. xo thanks again all

 
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Old 04-02-2013, 12:20 PM   #14
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Re: Some days are diamonds... help!

hi all: can anyone help me with figuring out what stage Mum is in? how do we tell? do the LTC facilities talk to you about stages? she does eat well and still has good days but is having very bad days. I have come to realize now through all your help that I should take what you've said and take each day as it comes. I'm afraid to ask what the most obvious symptoms are of certain stages as far as physical changes.

 
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Old 04-02-2013, 01:07 PM   #15
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Re: Some days are diamonds... help!

I got the info. from the internet. Hope it helps:
-----------------------------------------------------------------------
Progression

Vascular dementia is an illness that can affect the brain after a stroke or any other significant loss of blood. This disease is also called multi-infarct dementia or MID. It is commonly confused with Alzheimer's disease because the symptoms are similar--a patient also can have both. After a stroke, MID can progress gradually in stages but can also become aggravated by a second stroke or heart attack. Most patients experience vascular dementia in two phases: early onset and a later stage, in which they experience rapid deterioration of motor functions and cognitive abilities.
Early Stages

The onset of symptoms is usually gradual in the early stages of vascular dementia. A patient might experience problems walking, thinking straight or performing regular activities. Difficulty following conversations, short-term memory loss and lack of concentration are also early signs of trouble. Because early symptoms occur slowly over time, people with vascular dementia have more insight into their own condition. A person might only need small reminders and cues to maintain a normal lifestyle.
Later Stages

The need for supervision increases once a person reaches later stages of vascular dementia. Their mental can be so limited that they can become a danger to themselves. A patient in later stages of MID can experience hallucinations, delusions, confusion and wandering. The progression of the illness in later stages causes patients to become frail, incontinent, and immobile. One of the most difficult behavioral changes of patients in late stage dementia is an increased tendency to become violent or strike out at caregivers. Most people at this stage require the constant care of a nursing facility.

 
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