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.
hard as that seems. We never know what is just around the corner and i feel that's just as well. Blessings
Friday's afternoon's are happy hour at dad's AL. YEs if allowed they have cocktails/beer and snacks with the activity director playing the piano for an hour and some have instruments. Since dad moved in last July, I have missed 3 happy hours, one I was ill, one I had to work and the other we had an event to go to. Slept poorly last night and I was busy at work so I did not attend this afternoon. And I feel guilty as next Friday we have an annual event so I will miss again. I am sure my sis who lives 1000 miles away will give me grief about this. Leaving dad after happy hour hour is over which about 4:30 has always been a bit confusing for him partly because many people are coming and going, lots of talking and dad pretty much keeps to himself.
I did spend most of Wednesday with him going to local botanical garden, an errand, lunch and a trip to a greenhouse.
1. When you are lost in the haze that is Alzheimer's I cry .. a lot
2. I want for you to be happy but I dont know whether you are
3. That hurts
4. I don't know how frightened you are
5. I'm not perfect as a care Mum but I do try
6. I watch over you when you sleep at night and hold your hand until you stop being restless
7. When you fall the fear in your eyes breaks my heart
8. When you ask to die I die inside because I can't help you
9. Just because I am cross with you sometimes, it doesn't mean I have stopped loving you
10. I hate your disease but I would do it all again because you're my mum
Try now to get some rest for you will need it in the coming days and weeks as you grieve and put her things in order ...my thoughts are with you hun xxxx
I am tempted to say go and drop her off at their house so you can recharge your batteries but I suspect that is a no go area for you and I suspect they may just drop her straight back. I am being a bir crass here this is your mum not a bag but hell girl you are entitled to a break sometimes.
But you are where you are in this life so some possible options. I dont know whether you drive or what your financial situation or your mothers capacity either so I am working blind but some suggestions.
Is there a centre near you that you could get mum to? Even if you have to stay with her at least you would get a little more conversation and socialisation than you are right now.
Can you organise for people and their carers to come to your house for coffee one morning? Again socialisation for you and your mum would be beneficial - DO NOT ALLOW THEM TO COME TO YOUR HOUSE WITHOUT THE CAREGIVER NO MATTER HOW NICE THEY ARE.
Would your local church be able to offer a sitter for you one afternoon a week just so you can go and do whatever you want to for a couple of hours (even if it is to only sleep)
Have you considered having a family meeting with your Mum there too and saying I need a break so I can continmue to give Mum the best care I can - use the loss of your dad/grandmother as the pivotal point of you needing time to grieve properly
Are there any charities that could support you?
Could you get your Mum into respite for a week or so ?
You have to have a break now and again hun or you will wreck your health and then who will look after Mum xxx God bless sweetheart
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My thoughts and prayers are with you right now. It's a really difficult time for you and MIL. I wish peace for her and for you and your family.
Now is the time to notify relatives about how ill she is so those who want to visit can do so if she actually wants to see the the visitors. Limit the time spent with her because she will be very exhausted. She is days from being bedbound so be prepared to have all the help needed in place. if she is heavy you need 2 people to turn her etc. Do not resist the hospice nurses if they suggest using morphine and Ativan (Lorazepam) or similar anti anxiety. You are not hurrying her death but helping her pass more comfortably. Any or all of her health problems cause extreme anxiety and it is just compassionate care to use the medications available. The morphine will ease the feelings of not being able to breath. It is merely used for comfort. The build up of fluid in the lungs is very distressing to watch but the patient quickly slips into unconsciousness at this stage. There is a medication called Levsin which is usually used for bladder spasms but has the side effect of drying up terminal secretions. It is a tiny pill and can be just slipped under the tongue.
MIL's kidneys have failed, her heart is too weak to continue to effectively pump blood round her body which will lead to mental confusion among other things. The kidney failure will cause itchy flaking skin plus nausia and possibly vomiting.
This may sound very cold and hard which it is not meant to be but I felt you were asking for MIL's expectations.
Talk frankly with her hospice providers and ask how to proceed from here. With their experience they will be better able to assess her condition and answer your questions. I can only send you good thoughts for strength to help MIL.
The oedema will be making her feel like poo, but don't panic - as soon as the diuretic kicks in it should improve dramatically.
Crowded – find a paid caregiver to stay with FIL so that you and hubby can do things with your little one. Check you local law, install hidden cameras only in public rooms (no bathroom or bedroom) that you can check online – if not for the caregiver but also to see how FIL is behaving. Once you find a reliable caring person, make sure FIL understands that this is non-negotiable. You all need some immediate family outing. Best to start now so that he gets used to it as he progresses.