I moved my mother into my husband's and my home in November of 2005. She had fell at home and broke her hip. She was not able to live on own any longer anyway. This gave us an excuse to move her into our home. She was a very independent woman before the accident, but things have changed in the last few months.
Her short term memory is not good at all any more. She can not wheel herself around the house any longer.
She just got out of the hospital back in June about a 2 week stay with a blockage in her colon and then she contracted VRE. That is not fun to have in the home. I felt so sorry for her.
I am starting to have crying sessions it seems like every other day anymore. I do not see my mother any longer I see a person declining quickly. I am feeling overwhelmed and I don't think my family sees it. I have told them I need to get away for a few days, but that never seems to happen. No one has time to watch or be with mom except me. I am the only child so this is all on my shoulders. Her brother is not any help they have not spoke in several years now.
I do not know if I am just going through a stage or if I am starting to get depressed. I am with mom almost 24/7 except when a homemaker comes in daily. A person can go to Walmart just so many times to get out of the house. I seem to have lost my friends because I can not get together with them anymore.
This on-line discussion is a life line for me. This way I can communication with people and see how they handle different things that come up in their caregiving also.
So if anyone has advice please let me know how to get myself under control.
Losing Control
God Bless you all
I am 24/7 caregiver for my husband who suffered a massive debilitating stroke in his cerebelum on May 22, 2008. We did not know he hd a malformed vein until the accident when he fell from his bike, hit his head, later suffered a severe headache and then during the course of his bike ride he had a major brain bleed. I have done everything in my power to help this man live and survive this. It has not been easy and is certainly a challenge. However for your own health and well being you do need a break once in a whike, so respite is what you need. If no one can help you in your family call your local senior resource center or state counsil on aging. They can direct you to some non profits who may be willing to assist you in getting some grant monies to let you go 4 to 8 hours a week to go get something done for yourself. I was fortunate to have been able to get this, and even if it is only to go get a haircut or massage, it is quality time for yourself. I have hired help now to come and do my husbands chores with the yard so I do not have to fret about it, I take my laundry out to be done, and have someone come in to help me with keeping the house clean. It is a hard job caring for someone, but I think often of the gift God has givenme in the extra time I have with Jerry. Had he died I would have been so devistated. I have so much to be thankful for, and I value every precious moment I have been given ti tell him I love him, to kiss him, to d my best for him. As tough as it is and demanding as it can be, I am grateful for having been able to love my husband even in the darkest of journeys in our lives.
Nauseated
You know, don't mean to say, "That won't work...this won't work..." But one thing I didn't add to the mix, is that Mom has a dog. Easy to find a place for her without one. Hard to find a place to accept her dog. Mom's always had a dog. She already lost her husband. To take her out of her home means she'd lose her dog and house, too. That's a lot of losses, on top of ill health. The house is too big, and expensive to maintain, and she can't keep up with all of it, and we can't either, distance or no distance. It's too big (5 bedroom, 2 sets of stairs, 2 fireplaces) for one person, and she needs to sell and downsize belongings. (More losses.) I want to move her, but then it would add work for us, having to do the move, and care for both. I idealize her being close, so I could watch her care, but she has never particularly liked me, and visa versa. (You get the drift...) She'd also be losing her church activities, friends of 50 years, clubs, shopping haunts (bummer!), etc., just to be closer to me. My decision to leave her there for now was to provide grace during the stress of Cancer, etc. So she would be in familiar territory, not have to grieve the loss of a dog. I wanted to move her, to "force" her to want to be by her husband in a nursing home by me, but we are all happier with the peace verses the drama. I know I'm talking in circles. What's right for her? What's right for Dad? And what's right for my husband, son and me? Who gets to choose? I figure that as long as she is not a danger to herself, she can stay there...or? Doesn't matter what I do, I'm the bad guy. She has needs
Dear Lazor, I don't like a liar either and so glad your MIL recognizes her as what she is. As a professional caregive I understand that you walk a fine line but it is my belief that if you are honest with the family and explain that you are there to "do all those things" they can't be bothered with they will have to trust you as far as her medical help goes. If they can't deal with the fact that Mamma is at the end of her life that is their problem. Not so easy I know but facts are facts and truth is truth and it is more important for the facts and truth be related to the patient not the others.
Milaw was staying with her and son one weekend a month to give us a break. Then in October it stopped. I told my husband Joan did something because thats the reason she stopped. Now its beginning to surface. This is the same woman that was suppose to care for her the weekend they sold all of her belongings( not telling us what they were doing) and only left her an office chair to sit in all day long..... I don't like liars !!!
Anyway, the daughter called to tell me results. This Dr. is in the top ten nation wide for his care of dementia/alz and I was floored at some of his suggestions.
When she refuses to comply, as in putting on her shoes, I am to take her by the hand and gently assert myself and either help her or put her shoes on her. No way is that going to work.
Suggestions such as this confuse me. I have to trust his training and expertise as this is his field, but she is still very capable of putting on her own shoes. And experience has taught me if I do too much for her she will simply let me do it and end up depressed.
He was impressed that she was doing as well as she was, since he had not seen her for four years for initial diagnosis. He did change some of her meds, and decreased some. So hopefully her energy will increase some as she was taking too many antidepressants.(I can not get a straight answer as to who put her on extra meds)
So on top of day to day frustrations I have the family to deal with. As I have said on many occasions my heart goes out to those who have 24/7 care giving. I at least get a daily break. But getting the family to do some things for her care is my biggest headache.
But the Dr. did make some suggestions that I will try with her. Sometimes what works one day does not work the next.
One of my biggest obstacles is the daughter from out of state that is still in denial about her condition. When she visits I am a wreck trying to keep routine going and sidestepping the daughters interference. But I am with this woman everyday and guess I will have to figure out a way to talk with the daughter and help her to understand she is not helping the situation when she interferes with some things.
I will have time to think about this as her next visit is not for another few weeks.
As a "paid" caregiver there is such a very fine line between doing everything for everyone. A constant balancing act. So, those of you who have paid caregivers helping you, please consider the position we are in at times.
We are there to make things easier for family, yet, we are the ones who deal with the day to day confusion, fear, anxiety, ect. of the family member needing our care.
It is like being a surgeon and having someone come in and say, "no, cut here, not here". I think I missed my calling. I should have been a very highly paid psychiatrist. We have to wear many hats to keep things going smoothly for our client and keep the family happy and informed.
Ok, I feel better and time to get going for another day of being the juggler.
Thanks for listening. God Bless
One Physician suggested she go to a Geriatric Psychiatric Ward at one point, last year. I drove down 200 miles to do just that, only to find her in good spirits (at that moment), cooking dinner for herself, the house clean, and the laundry caught up. She was surprised to see us. She was doing so well, I didn't have the heart to take her to the place suggested. On what grounds would she be admitted. I'd be afraid they'd admit me if I tried that day, she was doing so well. But other days...boy! Slam dunk admission. One day I told her about the ridiculous amount of $$$ spent on medical copays and deductibles only to have her say, "So what do you want me to do, kill myself?" Where did that come from? I'm learning that she is allowed to complain, but me, never. And she can argue, but I dare not. Just go along with the Mama Drama. Some people have talked to me about her declining cognitive abilities. And she's even gone to a Neurologist for memory and cognitive testing (but no diagnosis). Perhaps she is early stage... Either that, or I need a shrink soon, for she really is driving me crazy!!! I give her slack, because she has the ability to enjoy familiar social activities, but I handle the important things, like finances. She scares me, but I don't know what to do. So far, I can get no back up from the Medical profession, or direction, etc. I don't know what to do, but I know something is wrong with Mom. I am tired of status quo, and not sure what direction to go. Any suggestions???
I also have a sister and 2 brothers who refuse to help in ANY way. I have no idea why they dont call or visit. My mother was a great mom.
Before she got real sick she asked me if she was a bad mother! She was a really good mom. Then, she made me turn the picture I put on her table of my sister and brothers face down. Breaks my heart because it broke hers.
I guess they all have full time jobs, kids of their own etc. But so did I! I had a career of paralegal and I have 3 grand babies and a step grand son! I gave up my career for my mother. At least I get to see the grand babies when ever I want.
Anyway, it is a hard job; watching my mom turn into a strange person that is nothing like my mother was. She used to be a vibrant, independant woman. Now she just lays in bed all day and I cant remember the last time she laughed or even smiled. She is bossy and mean and I have to talk and argue to get her to do simple things like wash up, take a bath or brush her teeth (she still has her teeth!). And it's no fun when she has bathroom accidents.
She is helpless. I guess thats why I care for her now. She cared for me when I was a helpless baby, now it's my turn. A little support from my brothers and sister would be nice. My sister does call me or email me once in a while, and she came over on mom's birthday. But my brothers: forget it. It's like my mom is already dead. sad.
Hang in there all you care takers. There is a very special place in heaven for you all!
luv,sue
John Denver so I will listen to Rocky Mountain High while I'm at it and all his other wonderful hits.