This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
But, now I am nearly done here, move to facility is Saturday. It has bee a long four years, but I was able to give them that time together in their home that otherwise they would not have had. I am tired and worn out and ready to find out what the rest of my life has in store for me.
Google come into my world.pdf
It will take you to a site which OK is Australian but it does explain a lot - it is a learning resource and is over 70 pages long BUT it says this:
The general definition of dementia relates to any organic condition where there is an irreversible loss of cognitive capacity and memory, such that there is a decline in a person’s ability to function socially, physically and emotionally over time (Kitwood, 1997, Chen, Foo, & Ury, 2002; World Health Organisation, 2007).
The kinds of cognitive disturbance that occur include:
‘memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement.
...The impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation’ (World Health Organisation, 2007).
Dementia as a syndrome relates to at least 60 different disease processes that result in neurological failure (Jacques & Jackson, 2000; Ritchie & Lovestone, 2002). Progressive deterioration in more than two cognitive domains along with behavioural changes, as well as depression and other affective disorders observed at the same time, are primary indicators of the disease (Bozoki, Giordani, Heidebrink, Berent, & Foser, 2001; Koltai, Welsh-Bohmer, & Schmechel, 2001; World Health Organisation, 2007).
This progressive deterioration may occur over a long period of time during which physical ability is maintained but independent functioning is compromised.
At present, there is no medical cure for dementia and treatment focuses on medications that reduce the severity of symptoms and may allay the progression of the disease. In the absence of any cure, therapies and care are directed towards enhancing the lives and wellbeing of people with dementia and their carers.
It is great because it tells you about demetia and the best methods of care for your loved one - IT IS NOT A HOW TO CARE WITHOUT EFFORT read for sure but it does have some brilliant ideas
I want to be able to go to the store to buy underwear or shoes or something on a whim---like I used to.
I want to be able to take off for a whole day or even a weekend---like I used to
I want to browse a bookstore or library
I want to be able to walk without rushing back home (in case)
I want to be able to spend a day with my kids or grandkids (without having to care for her too.
I want to be able to go to the movies
I want to spend an evening with friends again.
I want to be able to date----DATE???? What's that?
I want to be able to take a nap on a quiet, peaceful afternoon without the time constraints---just enjoying the nothing to do again.
And don't say one day it will happen and I will miss having her in my life---I won't miss it a bit.
Sorry for those who may be offended but this is how I feel
And don't apologise for how you feel! Sending you a shoulder rub for the frustration.
I dream of a months respite so I can come and give you all a break for at least one day
I long to feel the sun on my back while i read a book
I want my old mum back (and if there really was any justice in this cruel cruel world my dad too....especially my dad)
I hope I can find some good timesto reflect on when she does pass
I'd like someone just once to say have a day out I will come and look after your mum without being asked
I want friends again.
I want to go out and eat a meal I like instead of cooking ones she likes
I want to have a massage done by a blokey who will be nice to me and not treat me like £$%^.
And I know I will miss having mum in my life but it will not be the dreadful loss that most of you will experience I am sad to say
Today she said I had done something well and thanked me. I cant ever remember her saying that to me so I will cherish that one moment - there may never be another.
We all walk this way but once.....I dream, I hope, I yearn but when all is said and done I know reality is just a wall away.
Keep the faith peeps xxx
She may not be in the actively dying stage but there is little difference between that and the pre dying stage. Ask about stopping the lasix and other meds. it is not getting rid of the fluid and probably makes her mouth dry. do not try and give her food you feel is "good for her" now just small amounts of things she fancies. for example if she asks for ice cream just give a table spoon presented in a small pretty bowl with a teaspoon to eat it. she can always have more. She may like ice cold drinks but many prefer liquids at room temperature as they go down easier. This is the hardest time for you but you are doing a fantastic job and clearly love your MIL. Is hospice sending an aide for bathing etc. Take that time to sit out side and relax don't hover and help. Ask hospice any questions you have and call when you need reassurance that is why they are there and keep in touch here. The beauty of this site is that you are not bothering anyone. We don't know you so if we choose to not answer your posts it is because we don't know the answer, are too busy, your question is too personally painful. It helps a lot just to write your thoughts and feelings down.
Men as everyone knows are wired differently from women and early on in my career I thought husbands stayed away from their dying wives because they did not care. Hubby set me right on that one. He said they stayed away because they do care very much. They are the hunters, protectors, the women are the caregivers
because of the fact she is being weaned off the steriod treatment-the nurses said wait until that is done before taking her off any rest of the medication they want to take her off of. She doesnt drink much at all or pass much urine. More at night than any other time. I so do appreciate all your comments especially all of your insights. It really helps me feel like I know where she is at in her illness.
I don't know what I was 'wired' to do. Some things come more easily than others. Does that mean I wasn't "wired" to work 14 hrs a day? I guess not - because it's hard for me to do - but I still do it.
I am so sorry you are going through this. BUT, I hope my children have a few days or hours to go through this with me. I rather have that then a sudden death.
My kids need to learn from my dying. I certainly learned a lot from watching my husband die. He was such a wonderful Man of God. He gave me such a gift with the way he died. Please try somehow to realize this is NOT a bad time. (well in some cases it is),,,, dying is inevitable...it is how we die that our children remember. AS my mother was dying for days she saw her father and was so happy....She did not want anything on TV, just funny shows or faith shows. She was not afraid. It seems that WE who are left behind are fearful, but those dying seem to have so much courage and peace. At least that has been my experience. If your mother attended church or is a Christian, you might consider calling the pastor or priest and having a family communion before she goes. You will as a family always remember this moment. My husband could not take liquids or the bread, so we just had communion together and spoke the words. It was a beautiful moment. I am so looking forward to seeing him someday soon,
Also They were gonna come back today after I got her to drink- but I knew it still wasnt enough. The main hospice nurse called me this morning and said that it was very dangerous for her to have blood with her veins like this-that she could have a heart attack. They are gonna try monday and the main Rn is going to come out herself. told me to get her to drink all weekend.
Here is something else I wonder...on Wednesday night her legs were up all night slightly elevated and the next morning the fluid was totally gone. Her legs have puffed a little since then but how this did this, I have no idea...She has been on lasix and it never helped much until that night. I wonder with the fluid going out so rapidly overnight if it caused her veins to collapse. They said on monday if her veins werent in better shape and they did not feel like it would be safe for her to have blood, then there would be no blood at all and the main hospice nurse would talk to her. Just wondering what you think on all these points. and is this part of her going down? Thanks- gawoman