My husband (with dementia and living at home with mw) seems to have one little problem after another. They don't seem to be serious ones, but, of course, he tells me about them constantly. I get tired hearing about them, make an appointment with someone I think can help. After I interrupt my own fitness program to get him to the appointment, he doesn't know why he HAS TO GO. He doesn't remember what he's been complaining about. Not only is it embarrassing to me, but I'm getting tired of never having time to take care of myself. Although he seems to be quite healthy, he is now going to 3 doctors, a dentist (out of town) and now a physical therapist (every other day). The therapist gave him an exercise to do at home, which, of course, is another responsibility for me. I must keep reminding him to do it and he never understands, nor does he do it correctly. I am about ready to just ignore his complaints unless they are so severe that there's no alternative. I'm interested in knowing if others have suggestions on this?
You can't run to the Dr. every time your husband has some minor complaint. For example, if he complains of a stomach ache try to Pepto or an antacid. Give him some Advil. Try a little Miralax. If you've done all of these things and he's still complaining that would be the time to call the Dr. But use your own best judgement first. See if you can alleviate the problem yourself first before running to the Dr. If not, call for an appointment. No one goes to the Dr. for every little thing that comes up on a daily basis. When I cared for my dad he had multiple health issues and while he wasn't a complainer I had to prioritize his health issues. A bruise or cut that wouldn't heal wouldn't get my attention as much as blood in the toilet would. And that cut I'd treat with Neosporin and a bandaid and just keep an eye on it for a few days.
And I'm sure you can always call his Dr. and ask the nurse for an opinion. Or call a nurses hotline for an opinion. But you shouldn't have to run to the Dr. everyday for some minor thing that your husband doesn't even remember complaining about.
Next he complains daily about his knee hurting. The doctor ordered an X-Ray, which we've heard nothing about yet. The latest is a finger on his right hand that won't open up. We've started with a PT to see if therapy will help. That's a trip to Rehab every other day. Meanwhile, he's had to have four iron infusions - loss of blood unknown. He also got new dentures in the middle of all of this.
Maybe that gives you just a little idea of the trips I make. And this is causing me NOT to be able to keep up with my own health - exercise,etc. I have dropped out of everything I ever did for enjoyment and vacations. I'm 4 yrs. Younger than my husband and, so far, am in good health. I feel as though my entire life has been snatched from me.
Yup. In many ways it has been. To have your life partner, your soul mate, your other half become your dependent is absolutely life-changing. If it weren't his aches and pains that were driving home this reality it would be something else. Not only do you now have to care for him, decide for him, think for him, you also have to take over whatever tasks he used to perform.
My mother has dementia. It is sad. It is stressful. But it doesn't hold a candle to the stress level (for me) of my husband having dementia. One person gets dementia but the whole family suffers from it, and the spouse suffers in more intimate ways.
So I offer you hugs. And a little snippet of advice. You MUST retain at least some of your own life. And, yes, this just adds to your to-do list and is another source of stress, but it must be done if you want to end this journey sane and with enough energy to reclaim your life on your own. I suggest the first area you carve out is your own health routines. Except for an actual emergency, put those things first. Get some "me" time on a regular basis.
One thing I wish I'd done differently is to have gotten more help and earlier in the journey. When I got it it made a world of difference. My husband went to an adult day health center a few days a week. And when he declined too much for that, we had a personal care attendant four days a week at home. The PCA helped him with the exercises the PT gave him to do. It helped to know that I was in charge of his care but that I didn't have to do every minute of it myself.
Dementia in a spouse can snatch your entire life from you if you let it. Resist. Hang on to as much of it as you can. Some things you may have to defer until your caregiving role is over. But don't let be everything.
Best wishes to you.
Obviously his bowel problems need dealing with as that sounds to be a physical problem esp with the blood loss. Meanwhile to 'treat ' that see that he has sufficient fibre in his diet and yes check that he isn't constipated.
Yes you have to decide for him [and you] what complaints need treating. as an example, I use the number 3... if its really painful, getting worse, not letting me be alive, then I wait 3 mins, [that would be broken bone, chest pain] IF its moderate like vomiting, pain from a sprain. then wait 3 days.. and if a new chronic type problem starts up but apart from knowing its there and not getting worse I wait 3mths. or the next visit to the doc.
I agree with the others for your own health and sanity, you need to set time aside for yourself. Can he spend a day at a facility that gives you a break, so that you can walk down the street, and just look in the shop windows and go have a coffee somewhere etc, or go for a jog.
AS for the physical exercises. IF he no longer has that 'problem' then let the matter lie and stop them... he wont remember, he wont get better because of them, and it is only another thing for YOU to cope with.
good luck
The current health care system does not help the elderly. What I have noted both in hospitals and with physicians that they tend to treat the elderly no different than younger folks. They prescribe the same dosages of medicine even though every RX I read states that side effects are much more severe in the elderly and it takes longer for the med to clear their systems. When my mother was in the hospital recently, they wanted to do 3 major tests and procedures one after the other, when one made her so weak and exhausted, she could barely stand up. I had to threaten withdrawing consent to get them to allow her rest in between.
My mother has always been a person with great personal strength but daily struggles with health issues and coping with chronic pain issues have stolen all of it. She speaks of wanting to die every single day.
I say all this because I too have feelings that sometimes my entire life is consumed with caring for my mother and advocating for her in a sometimes chaotic and uncaring health system, and even indulge in self pity sometimes because of it. I have given up church activities and other social activities, and even a lot of my own health care ( as I am 65 myself, but healthy thank the lord). I try each time I am down to remind myself of all that my mother has lost: her dignity, her husband and the home that they shared, my brother who died of heart failure at 39, the activities she enjoyed such as exercise, reading (she also has macula degeneration and has lost most of her sight), and countless other things. I remind myself of all that she did for me when I was a child, a young adult who still needed the guidance, wisdom, and yes sometimes money of my parents. I think of all that, get up, and take each day at a time, get through the bad ones, enjoy the few times when mom does feel OK, ask God for strength every day, and go on. What else can we do?
on my second elder advocacy gig right now and i couldnt be more impressed by the changes occurring in medicine. my mother was hospitalized with possibly heart failure a couple of years back . the hospital has a job to do -- a thorough , often 6 day physical workup . any return to hospital for unresolved or undiagnosed issues in a 6 month time frame can result in severe fines to the hospital . mom wanted to do battle with the docs thru 6 days of testing -- not happning -- they knocked her colder than a cucumber for 6 days and ran their tests. they done a wonderful job . she left there with hospice assistance and oversight by aps to make sure the team at home was adequate.
aunt edna , more recently , 6 day thorough health workup , then 10 days in physical rehab , then followed home by a home care team . not hospice , per se , just professional help for the family team..
i feel like we could ask for and recieve any kind of help .
people want to go overboard with the advocating for yourself thing a bit these days . i know a bunch of hepc chat group members who think its cute to carry around a stack of charts and argue with world class liver specialists about silly numbers they know nothing about -- then occasionally one of them has the audacity to be shocked when a doc tosses them clear out of his office ..
i recently told my hepc treatment team that i feel better than i have in 30 years, i shant give a rats azz what your numbers eventually read . numbers , shnumbers .. put my trust in them , made them smile..
I agree with Pam in that some of these things are just aging issues which you can put off a bit and then see if he continues to complain over time.
You might want to look into adult day care for him. If he's better occupied, he may not find as many issues to complain about. That would give you time to do your health care routines, too.
It's never easy to know what health complaints need attention and what smaller issue you can let go. But diversion could help.
We would love to have your keep us informed on your life and how this is going for you.
Continue to take care of yourself - get help if needed.
Carol
I just realize that these episodes are cries for attention. When she is not feeling well, we are all over her, trying this and that to make her feel better, and I usually sit with her just in case. If I ask her if she is feeling better, she will say, "yes, but just a little bit, not much better", I'm sure it's because she doesn't want me to leave the room. I understand it's aggrivating because it takes so much time and energy to care for someone like this. Try to find time for yourself, even if it's just a few hours. Maybe hire a companion for him, or a sitter so you can have a small amount of time to do what you want to do. Maybe get exercise DVDs to use in another room, a treadmill, or a weight set if you are doing any strength training. I'm ashamed to say, but I know on the weekends, I live for my MIL's nap time, then I can do whatever I enjoy or have to do, or take a nap myself! We have a pool, and really the only time I can swim or sunbathe/lounge in the pool is when she is napping. Seems very self-centered of me, but when you are a caregiver, you have to have something in life that makes you happy, that you are doing for yourself, and only yourself. It makes life worthwhile!
Mom has a series---I mean a circular series of ailments. I have addressed ALL of them with her doctor. Over the past years she has brought up (and seen the doc for --- and not in sequential order): her broken wrist, her trigger finger, her carpal tunnel, her hemorrhoids, her teeth (still working on this), her warts/moles on her skin, her watery eyes (which she needs surgery to fully correct), her vision (erroneously bought her reading glasses which she doesn't use), her blood sugar (ongoing), her toenail (which we have half removed once), her back/hip (gone to doc and physical therapy and she now doesn't even remember having a back problem which went on for months), her hair (not a physical problem but part of the body), wrinkles on her skin and age spots, her stomach (have done all except 'scoping' her stomach. not gonna do that).
Not only do we re-visit these ailments over and over but once in awhile she will come up with a new one. Just yesterday we were in the kitchen and she starts slightly massaging her chest muscle and says something to the effect, "I need to go to the doctor about this 'soreness' on my chest". I say (naturally), "what soreness"? She proceeds to tell me about this 'tender or sore' area that she is experiencing. I will tell her that I didn't know about it. When did it show up? And this is the clincher. She will say to me, "Oh, I've had this thing for awhile...."!
Then this last thing that just happened was funny. I woke one morning to my mother calling me that she didn't feel good---she had an intense headache. I proceed to make sure all vitals are good and fix her pillows and body in her bed. I only had this essential oil of peppermint to put on her head and did so. I left the room for 5 minutes to go get a tylenol and came back to give it to her. I say, "here's the Tylenol for your headache". She responds, "What headache? I don't have a headache"!!!!
Have a good day all..
His bowel problems and blood loss are major issues and very painful. You must take care of that. The other aches and pains, treat them with appropriate analgesics, creams, laxatives, etc. Any other extreme signs of problems need to be dealt with and you must put his needs ahead of your own. You'll find you will be doing things that you never imagined doing before.
Our plans for retirement were retire at age 60, go to Hawaii first and then make a trip every summer to some seaside or world destination. We were going to buy a small RV to make impromptu trips to every national park. We would continue our fitness class 3 days a week and live happily ever after. Then he got FTD at age 54, lost the ability to speak correctly, then had a TIA which advanced his dementia more rapidly. I had to quit my job early and wait a year before my retirement benefit would be paid. No more exercise classes for either one of us, no Hawaii, no RV. We did squeeze in 3 short trips before his mobility issues became too severe. Basically no meaningful communication between us for the last 8 years, as his speech was affected first. I would love it if he could tell me his finger or knee hurt. He is bed/wheelchair bound now. Neither one of us leaves the house on a typical day. I have a personal care aide in 6 days a week to help bath and dress him. I occasionally have a day of respite which I often use to see my dentist and doctor. This is the reality of living with a spouse with dementia.
Take care of his major health issues, take care of your health issues. Get some help or take him to adult daycare. If he is a veteran, check out their A & A and respite. If you are really overwhelmed and you can afford it, place him in a Memory care facility. Many elder communities have them now for dementia patients who are still in fairly good health. God bless you and help you.
He probably needs more attention and more people to talk to.
However, when you are the primary caregiver, expect to have your life interrupted. Basically, the elder becomes the center of the world and your life (work, relaxation, relationships)is fitted in around the elder's needs. After a bit, you will settle into a routine which works, but expect real health emergencies. Life as a primary caregiver is day to day.
Expect to have to change the routine based on his health decline and what he can and can't do will change over time.
Good luck.
To complicate, I look after the welfare of an 86 year old friend whose restricted license lets her only drive within 24 miles of her house. She lives alone and has no family left to help her. So we take her in to her doctors as well.
I think most of my life right now is spent in the car!!
As for the person who said, "only 3 doctors, I have 9" I actually listed 5 including the therapist. Anyway, it doesn't matter how many, it's how many TRIPS you make that counts.
I guess I've heard enough on this subject. I didn't get on this website to get criticism. For those who understood my frustration and made suggestions that are helpful, "THANK YOU!"