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.
I think I came on here, AC, about it. You see, I didn’t know that mom’s body was already shutting down. That’s why everyone told me that she was close to death’s door. Oh, yes, I forgot to mention, one night, her lower feet was super black. Gross looking. Then in the morning, it was back to normal. Then another time, her hands were super black, then the next morning, it was back to normal. That is also a sign of the body shutting down. Towards the end, every morning, around 630am, mom would struggle to breathe. It was an awful long 30 minutes of hearing her. I don’t know how many times I reached for the phone to call 911. I just couldn’t handle it. I felt so bad that she was struggling to breathe. A poster at the time told me to google dying. And so I did.
Mallory, it sounds like your mom loves to receive mail. Is there a way that you can just send her postcards every week? Or go on a flea market or garage sales and buy picture books of flowers, homes, gardens, etc.. Then tear out a page, fold it and mail it in an envelope. You can always write a short note about the picture enclosed.
She opens them (and maybe feels.importance & self-esteem via the act of opening a.letter.....)
It IS something she remember she has to do and she does it....after that she clearly hasn't a scooby do of what to do with them. You could always go paperless from the various companies and then print the statement/bills out put them in envelopes and give them to her to open - that way you have them both ways and if she loses one you have it covered
My mother had a cell phone when she first moved to assisted living but after calling so much and then calling 911 three times in a row, they came out and gave the phone to the manager and we took it. I hated taking her phone away but we had no choice. She can go to the nurses station and call if she needs us. Actually she is in progressive care. Her mind is gone but her physical heath is good. But, we have to bring her food. She will not go to the dinning room to eat or go walking. It is hard just getting her out of bed. She will not participate in any activities and just stays in her room and sleeps until 2:00 pm in the afternoon. My brother and I have to alternate the days so one of us has been there to see her. We hate to let more than one day go by without one of us there and she is 45 minutes from my home so it is not easy getting to her. She is in a nice facility but there were no affordable ones near me.. It is very hard for me getting there so often. But, we have to bring her food to eat. She lives on Boost and snacks. The doctor said she could live a long time just on the Boost Plus. Mother has no money, The home takes it all so my brother and I have to buy everything she needs. She does not want to shower and we have to almost force her. She was always such a clean and neat freak we cannot believe she will not get dressed or go walking. It is so sad and it breaks my heart. We the caregivers are so helpless as are the patients. It must be the worst illness that can happen to anyone. I feel so tired and worn out all the time from the mental and physical stress and I have CFS/FM/ME and this is very debilitating for me too. But I realize there are no easy answers and this could last for ten years or more since she is basically healthy. Mother hardly knows she is in the world but does complain and fuss so when we visit her. She knows how to put a guilt trip on us and with her being so out of her mind I realize she cannot help it. So, it is really heartbreaking to watch her and know there is nothing we can do for her but be there.
I can bring on the plane one carry-on and one purse. Due to my neck pain from even using a shoulder purse, I had to buy at Kmart an expensive (to me) rolling carry-on bag - which I will put extra clothes and essentials (in case my checked luggage gets lost). If it cannot fit below the seat in front of me, it will go up on the overhead bin. I love to buy purses, computer bags, and shoulder bags. I went to one of my luggage that has my purses in it. For now, I found my 'purse' which is actually a travel bag for a small laptop and essentials. My iPad (without the keyboard), wallet, passport, 1 thin book, and hopefully essential toiletries can fit in it.
The earphones... I have so many of them - in my search to find ones that would work with my laptop. Most did Not. So, I went through my stash and tried each one to see if it works with the iPad. Found 2 that was very clear. Cable kept tangling and decided I will look later tonight in my stash for that cable fish. They always give that as a freebie when I bought sets of screen protector and cover cases for the kindle and the nook (years ago). Lo and Behold, I noticed that I have an unopened packet of cable fish on the edge of my computer desk. Ooohhhh. I don't recall putting it there. Don't know how long it's been there. I googled on how to use it.
This morning, I went to do laundry. I noticed on top of the old washing machine, amidst the vines, a very pretty many faceted lead crystal small cup. I stared at it. Ignored it. Stared at it. Ignored it. My eyes were drawn to it. You see, last year, some very old, dirty saucers (for cups but the cups were missing) appeared on that old machine. I ignored the saucers for months. Finally caved in and took 2 in, washed it, cloroxed it, hot watered it, etc.... One of it is my favorite saucer.
Today, that lead cup was calling to me. I even walked up to it, to stare at it despite my brain telling me to stop, go the opposite. It's a trick. It wants me to take it into the house. I only went halfway, stopped and stared at the crystal glass. It wasn't there last weekend. It wasn't dirty like the saucers. It's shiny. Pretty. Drawn to it.
I remembered my nephew telling me that when the spirits try to give you something, you should take it. But the scaredy-cat me, said that if I take it into the house, whatever is attached to that glass, would be brought into the house by me - whom my nephew says that the spirits now view me as the head of the house - even though grandpa is still alive. Sis is too vulnerable with these spirits. And my thoughts keep going to that cup. Nope, I'm not going to bring it in.
I also bought lots of neck travel pillows. I dug up the inflatables - 4 of them. I've inflated 2. One is well covered with fleece but the u end is too short. It won't support my head on the sides. The cheaper one, is like a rectangle shape - which does support my head on the sides. After I'm done changing dad's pamper, I will inflate pillow 3 and 4 (4 is like a seatbelt shaped that hooks behind your neck and crosses your chest. Never tried it...) Later.. I have to do dad...
a caregvier to someone with dementia That is having health promblems And you try to help encourage they want to argue Im glad we have this place to vent on Are frustrations Or maybe something were going through being a caregvier Could help someone else Hugs and Prayers to all the caregivers
1 It is common for people who are alone to become depressed and withdrawn - antidepressants do have some effect but socialisation is far more effective.
2 It is very common for people with dementia to long for an end this is NOT depression it is their way of saying they dont like being frail/alone/isolated/unable to do the things they once did/relying on others etc
3 It is very common for carers to also feel like AND for similar reasons however since this cannot be easily resolved this can lead to depression and suicide in some cases so intevention is required in the form of respite among other things.
4 4 hours a week is not respite it is a break we should all seek to get EVERY DAY so that we can take time to reflect on what we need (carers that is)
5 People who are cared for may well recognise they are a burden even say that they hate being a burden but are often totally unwilling to release the carer from their control over them - in these cases a professional is far more effective because they dont have the emotional tie that a relative does
that's his 5 pennorthworth and he said it to me AND Mum and you know what she agrees with him ! Hmmm so far she still agrees but not sure how long that will last! probably till the next time i mention the word respite!!!
Mallory, AL would be great for your mom. You just need to find a very reputable one. I’ve taken some online courses of dementia. Elderly people NEED to associate with others. If they’re home by themselves or with family, they do become withdrawn from society. AL helps them find friends, and they sometimes blossom with these new friends. If AL is not an option yet, the adult day care is great. This will help your mom come out of her shell and enjoy having friends. The medical world have seen how much having outside normal life helps elderly – even those who have dementia. Another thing about doing office work at your mom’s – she will want more and more of your attention. I hope this won’t affect your business.
Prayerservant, you already know what’s ahead of you. I had reached your stage when my dad had a stroke and became bedridden. For over 13 years, dad and I took care of bedridden mom. So, when dad had his stroke, I realized that I have a very loooong road ahead of me. I was now taking care of 2 bedridden parents and none of my 7 siblings stepped up to help me. Nor my numerous adult nieces and nephews. I became seriously suicidal – set the date, where and how. I’m sooo glad that you’re proactive and got an aide. Kudos to you! And getting all those necessary paperworks. You’re moving in the right direction. =) {{{Hugs}}}
But above all stay with us and make sure that at least once a day you look in the mirror and say to the person you see I am beautiful and i deserve the best so today I am going to find the best FOR ME xxxxxxxxxxxx
If he doesnt want to do that then tell him (note tell - do not suggest ask request or anysuch similar none of this please may I either!) that you are going to hire a sitter for one day a week whether he likes it or not. She doesnt need specialist care because you are not a specialist nurse (at least as far as I am aware). Your MIL is HIS responsibility NOT YOURS
Rant over - I now remember why I divorced my controlling husband
Yes, roundtrip economy class.
I woke up this morning. Wondering what was wrong. What woke me up? Oh, I know! It's soooo quiet. Our livingroom's AC is very noisy. Very. I woke up to total silence. Total. I looked at my night light, it was off. Power outage. Strange how a sudden background noise that suddenly becomes silent - can wake us up. 11pm. I'm getting dizziness. Very sleepy. Still writing check payments for bills. Time to shower and maybe finish off those bills.
Glad - if I had won a one-way ticket, I would think the same thing. That it's God's way of telling me that it's time to move on. Except I would argue with Him and tell Him that I'm now too old to realize my dreams of traveling. I'm very forgetful now. I'm not as brave as I was when I used to travel by myself. Where will I go?
Mallory, one good reason the AL wants all of your mom's financial record is to know if she can pay for her stay, and how long. I have read here on this site, that they also have stepped in, went to court and took POA or some kind of legal standing over the parent. Then the NH or AL handled their client's financial 100%. It's a darn if you and darn if you don't. I'd google info about the AL. Find out if they've ever gone to court and took over someone's financial, etc... Hope you find a reputable AL.
Of course if your Mum needs much care per se that is gonna cost sadly but it might be worth considering a sitter.