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'm so behind in doing dad's books. I just realized how far behind I am in reconciling all his accounts/expenses. Some of those lousy receipts-that-fade have faded. And these receipts from last year! I tried going online for our power bill account and ..can you believe that they don't offer history to previous bills?!
If he is that controlling, he should be POA. This whole thing ticks me off. YOU should be the landowner. You have saved them A MILLION DOLLARS in personal care over 20 plus years. Probably more than that.
Put your foot down sister. Get a lawyer. I don't care what your brother "claims". He is an ass. You deserve to be paid for decades of caregiving.
It is there on the maps because it is your legal right to use it. Have you ever had title work done on the property? What you learn may be interesting.
As for the land, fave sis visited. She's so frustrated with it. She wanted to build on it but couldn't. So, her and hubby bought a house/land. She's at the point where she prefers to just sell it and pay off her current mortgage.... Sis is a shop-a-holic. She would go through that money like nothing in no time. I told her that I hate to die and my portion of the land enlarges everyone's else portion. I would rather sell it now and enjoy the money. Than to die and it goes to them. By the way, I heard that my dad was only going to gift that big land to my 3 brothers. Mom had thrown a fit and he ended up including us 5 girls. Yay, mom!
Later.... it's getting later and later. I need to snack before it gets too late and my acid reflux worsens. My last meal was at 3:30pm. I'm still not hungry. But I need to eat something because I know that in the middle of the night, my stomach would start hurting like crazy....
Windy, how's it in the homefront? How are you holding up?
Now I'm getting a little melancholy. Most of the people there today visit my FIL quite regularly. With my brother gone now, it's down to just me and hubs (occasionally our son), but mostly me. I'm a bit jealous of all the support. Mom has no other relatives here and no friends. They were all left behind in another state when she moved here with me. It stinks being the only visitor and responsible for everything. Hopefully, my attitude will improve tomorrow when I get back into the swing of our regular routine. There are lots of really friendly and helpful people at her AL that have become friends of mine. Mom enjoys most of them too. She just won't make friends with people her own age. :(
She sounded pretty good on the phone today, though it's getting more difficult for her to hold the phone. Don't know what I will do when that ability goes away. I'm just taking it one day at a time.
Thanks for asking Book. You are a thoughtful person and I appreciate you. :)
Yet I feel so bad for the other parts of the US with soooo much snow, soooo much rain, and early tornado season.
I took a much need walk the other day. It was at a small local cemetery. I know, it is probably the last place someone would want to walk, but I found the very old headstones so very interesting to read, such as the four sided stones had family history. When you see a young wife who passed at 18, makes you wonder what happened back in 1899, did she pass from a illness, from childbirth, or some type of accident?
Sad were the stone that had so much moss on the north side you couldn't read anything on the stone. My sig other is employed at this cemetery, it's his retirement job after a long dual career. I am thinking it would be interesting to restore those very old headstones :)
Do you think you could get SO to take a scrubbing brush to some of these old headstones. We had some on our last property a family including a young girl. Our pediatrician said a lot of people died from measles in those days.
I asked her, "Are you saying that I HAVE to see only my doctor? That I cannot see another doctor who's available in the afternoon?"
She replied after a pause, "It's recommended that you see your regular doctor." ... silence.... silence ....
I replied in frustration, "It's okay! Never mind! Forget it. Bye."
Ugh!!! Tomorrow, if I remember, I will call my previous doctor from a previous clinic. THEY have no problem fitting ME into MY available date - even if it's to see another physician that is not my regular doctor. {I just hate the clinic's location - traffic gets bad around 3pm.}
Tonight, as I was changing his pamper, I gasped in pain. He asked what's wrong. My upper shoulder is hurting. He said, "Your head hurts, your neck hurts, you choking on the food and now your shoulder. What did the doctor say about the choking?" ... I strongly suspect my upper shoulders are hurting because my bones are changing. I can see my upper shoulders is starting to curve. When I lie completely flat, it's so painful to feel my back and shoulders stretching. Osteoporosis?
I know that when I am stressed out a lot (and often don't even realize it) I have a really hard time swallowing. I've had that for years and my dad had the same problem. It comes and goes and I just tell myself it will eventually pass. It always does sooner or later. It's anxiety for me. Everything in my body tenses up. It stinks.
Could the stress have your body in knots too? Osteoporosis takes a long time to show its' effects in most people. You are too young for that.
Turning and changing your dad is probably affecting your back and neck. It's part of your routine, I know, but the repetitive stress on your body can be wearing. You are used to going through the daily motions of his care. It's not doing you any favors though. It's wearing out your body when you should be maintaining your own back and joints for your own old age.
Easier said than done, I know.
((Hugs))
My mom has seemed to reach a plateau. How she hangs on, I don't know. Hubs and I are taking her out for lunch tomorrow. At 79 pounds and no strength it is incredible. She still wants to get out for awhile.
And I think Windy's right: your activities of sitting over a desk at work, hovering over your dad at home, that's probably what is leading to your rolled shoulders, I would think. Do you have health coverage that would let you get a bone scan just to make sure?
In Indiana (and I'm sure all over the U.S. and everywhere), there are these old cemeteries that seem to be forgotten completely. Just a patch of a few hundred sq ft off to the side of some rural road, with old crumbly headstones, and you wouldn't even know it was a cemetery there unless you stopped and were looking for it.
Yeah. I like exploring cemeteries, too. Lol.
What to do to improve things for you...? You could take supplements aimed at those with low immune issues. Emergen-C comes to mind. You could try one every day for 2 weeks and see how you feel...? Can you tolerate a bit of lemon juice? I put lemon or lime juice in my glasses of water throughout the day. I've managed (so far) to be around a bunch of sick people at work and I haven't come down with anything, which is pretty amazing for me as I used to get anything/everything, it seemed.
I still have plenty of issues with my health, too, but a little SSRI, plus diet changes, plus certain supplements, and getting rid of my major stress source seems to have helped much.
I just want you to be well and feel ok. I know what it's like to struggle with different things and just being generally "unwell" much of the time. You're in an in-between place where you're not acutely ill enough to get treatment, but you're constantly being run down by little things. Please take care of yourself!!! :-)
I'm jealous someone is bringing you falafel. I absolutely love falafel on pita with onions, tomatoes and tzatziki sauce. Sadly the nearest place that serves it is almost 35 miles away. :( A trip into the city might be in order this week. I've made them from the boxes of Near East mix but they are not the same.
We tried a new place for lunch today and my mom actually ate two medium-sized fried shrimp, one house made potato chip and a one inch square of ciabatta bread. The woman is calorie loading, I tell you. :(
She actually asked to go back to her AL early as she was in too much pain in her transport chair. That is a first. She insists her pressure sore on her tailbone is the problem. That is not so. I've seen it. The hospice nurse showed me the sore when she put salve on it. It is almost completely healed. She told mom that very emphatically. Mom dismisses the fact.
We're all on the same page that mom has a tailbone fracture, well, except for mom. Before she went on hospice, she had an xray that revealed multiple compression fractures to her spine due to severe osteoporosis. She is 79 pounds and her bones are extremely brittle.
My point of this long-winded story is mom is in pain now a great deal of the time. She is on the lowest dose of morphine possible. When I suggest that perhaps they can raise the dose a tiny bit, she flat out shuts me down. I realize she is in charge. It's just difficult to watch her wince in pain a good deal of the time knowing she hurts so much. Suggestions anyone?
She's got a ring cushion, has she? You know, the doughnut shaped ones?
Ibuprofen gel applied to the area might help a bit. It's a useful anti-inflammatory, and topical preparations don't cause the same bleeding problems as the tablets might. Oh - the pressure sore! Would it be possible to avoid it?
AliBoBali, love typing your screen name, it's cute :). Mom's pain receptors aren't numb at all. That's my conundrum. She's in constant pain and wincing, yet refuses to increase the pain relief. Like I said, she's in charge of what she wants as far as the morphine. I respect that. She's always had a fear and distrust of medication. She prefers to tough it out. At some point her multiple bone fractures and the pain might cause her to change her mind. She seems in agony a lot of the time. I feel helpless.
...distrust of medication... That's interesting to me. If I were in pain, and someone gave me something that made pain go away, I'd want it. Your mom sounds like a very strong and hardy lady.
She's now incontinent both ways. Doctor thinks her spinal fractures affected the communication pathway to her bladder and bowels.
I'm with you. I would not choose pain. Bring on the meds! It's the last frontier of control for her. I'll let her choose as she sees fit. She's cognitively slipping and I know she's afraid of losing control through meds.
Folks that don't like taking meds are hard to convince otherwise
My mom has numerous compressed vertebrae and has broken her tailbone at least three times still balks at even taking a Tylenol
Can you try applying a heating pad for 10 minutes or so to give her a little relief ?
Then, decades later, he went to their family doctor with gout and this particular doctor explained colchicine to him - right down to the chemistry of the thing - and there was a bit of a miracle: my dad, skipping round the kitchen, and saying how brilliant doctors were and that he felt like a spring lamb. Couldn't believe my eyes and ears.
Could you ask her doctor to have a grown-up conversation with your mother about pain management, and exactly how the drugs work, and how she owes it to herself to keep as active as possible? We children can beg and plead all we like, but in our parents' eyes what do we know? She might just listen to someone she respects, as long as s/he talks to her on the level and doesn't attempt to patronise her.
My brother watched grandma for a few hours today after work so I could prepare for the part time job. Grandma wouldn't let him take off her compression stockings or let him help her into bed. She didn't even ask him for a glass of water that she wanted. Grandma waited for my return because she wanted me to get her the water. That's normal so I ain't even mad. It just is. And I accept the reality.
I start work tomorrow! I've been calling it my vacation from the real work. I'm a little nervous to be honest. I haven't had that much contact with others for years. Been cooped up like on an ivisible leash. Not straying outside past a certain point so I can still hear her. Don't want to make a fool of myself. What casual banter do I say? All I can talk about is caregiving!!!
Also, my back pain is an ongoing issue, so I'm worried if it can physically handle the strain. Speaking of that... ^_^ I just tripped on a downspout and fell 1 hour ago and now the right side of my lower back is feeling strange. Joy.
I won a sweepstakes today which feels awesome. 2 round trip tickets on greyhound. The realization that I don't have any time to use them, money to spend at the destination or someone to go with is a bit of a downer. Who know what will happen in the future. Knowing that I could potentially leave the state for free gives my fantasies some more mental clout.
All in all a mixed day. Mostly positive besides my insecurities.