Dear Caregivers, I've been almost single-handedly taking care of my two parents, early 90s, both with some form of dementia, for 2+ years. I'm also responsible for the care and well-being of 2 very old dogs. My husband lives here as well, and does help out as best he can, though he's still working.
I reluctantly agreed to "let" him go hunting with buddies today, although I am quite sick. He thinks he "deserves" the trip...2 hours away in the bush, out of cell phone range. I am currently undergoing testing for suspected autoimmune disease, and have tried to let him know (over at least the last month) how I feel and what I'm capable of doing and what I am not. He says he "understands". I have a brother who lives half an hour away, and he agreed to take our parents for the afternoon.
I was supposed to have a break, a day of rest, but today turned into anything but. My brother was late arriving and spent an hour here "visiting" (while I filled him in on all the parent's current needs and demands). Then I tried to eat something, which didn't go down well, before leashing up the dogs for their walk. Our old house only has deadbolt locks, and on my way out the door into below freezing temperatures and snow, I checked twice to be certain I had the house keys. Well, I got back home to find I had car keys; no house keys. I do this kind of thing when I'm stressed and sick, which is why I tried to tell my family I needed help. Not to be left alone. I had to call my brother back into town to unlock the house. That meant 40 minutes sitting outside in the cold (with 13 and 14 yr old dogs).
I use "I" statements when talking about me and my health, and as I said, get replies like "okay" or "uh-huh". But they don't hear or aren't listening. Nine hours later, my husband still isn't home. I've fixed dinner for my parents; answered the same two questions over and over again, jumped up and down to locate "lost" canes the old folks "lost" in the bathroom. And I've lost my temper too many times. It's far from the first time I've felt abandoned to all the responsibilities when feeling sick. Lab tests have so far confirmed positive Antinuclear titres and I'm scheduled for a biopsy in two weeks. But I still get, "I understand, I have a sore foot" responses.
What do I have to do, beg? Kiss their behinds? My doctor is looking for lupus or rheumatoid arthritis. How do I get my needs across to my damned family?
To be honest, the actions of both your brother and your husband don’t seem unreasonable. Your brother was at least trying to help, and your husband isn’t unreasonable in thinking that he ‘deserves’ a break now and then. The ‘unreasonable’ bit is what you are trying to do.
The talk that you need to have with your family is not about how they need to be helping more. It’s about how you need to be doing less. Ask them for their candid comments about that, and discuss all the options. Good luck!
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You need someone else (other than your husband or your brother) to come in and take care of your parents before you get too sick to take care of them. OOPS! It sounds like you are already TOO SICK to take care of your parents: "undergoing testing for suspected autoimmune disease"; "positive Antinuclear titers"; "doctor is looking for lupus or rheumatoid arthritis".
Your profile says you want to care for your parents as long as humanly possible. So this is it and your health shows it’s not humanly possibly anymore. If you want to transition slowly, my suggestion is you need to hire in home caregivers asap. You husband still works, so having help when he’s at work could be enough at least to start. You could see how it goes and add on weekends/nights from there. And they could walk the dogs. Perhaps brother could help share the costs.
You need to take care of yourself.
That reality does not automatically require your husband and brother to take over the task you set for yourself. Have conversations with them about the changes that need to be made but don’t expect them to take over your work.
With whatever energy you have it is time to find alternate resources for your parents. That could be hiring an aide to come in or it could be finding a care home for them. It’s time to get your life in order for your own senior years. Please don’t begrudge your husband for wanting to live his own life. I’m sure it’s not easy to work and see you struggling each day. He’s taking care of himself. That’s a healthy thing to do. You need to do the same.
Caring for two elders is not easy for anyone. Under any circumstance. Get the help now to give you all a chance at the best life possible.
if you haven’t already read it, pick up the book “Being Mortal” by Atul Gawande. I think it helps to elevate ones focus. Good luck on your test results. Come back and let us know how things are going. Hugs to your pups too.
We're working on an extra half day of respite, a working lock for the bathroom my husband and I use (I go to get a shower, and my parents always intrude on me, not remembering where I am). Husband will get more keys cut, so I have a house key on the car key rings.
As to the person who said it might be time for a one way trip to the vet: my old, sweet Border Collie helps keep me alive. She is my comfort and consolation in difficult times. While you couldn't have known how I'd react to your comment, it did bring tears to my eyes. Usually walking the dogs is my only chance to get away from the house and clear my heart and mind. It's being sick and my needs seemingly invisible to family who could help out and support me when I need it, that really gets me down.
i can understand the value of pets, in your life. They give unconditional love, and provide a distraction when things are tough.
Your health, mental as well as physical is of primary importance. I am glad you have help coming into your home. But I must ask, other than the break you get when you walk the dogs, what forms of self are do you have? Do you get out to have coffee with friends? Go to a show or movie with your Dh? When did you last get away for a few days?
I understand that auto immune diseases are worsened by stress, how will you reduce your stress levels?
The caregiving responsibilities comprise an elderly married couple. Their dementia and their frailty have already taken two years of hard slog from you, and you know that their needs are going to increase. This is going to get harder.
The resources so far are you, on duty 24/7 because you are always the lead caregiver even when not hands-on; your husband, who is out at work and also in need of proper r&r; and just the one brother? - who has shown willingness to help but no realistic idea of what that actually looks like. You also have professional caregivers four afternoons a week.
The main benefit of the caregivers is that they will have accustomed your parents to accepting good care from non-family members. But as you remark, things rarely go wrong or even get lively to schedule. Four afternoons would be very nice respite if the rest of the time were well under control.
But it isn't under control, as shown by the effects the strain has already had on your health, and it is going to get worse.
You seem to think that your family is not hearing you. But if they did, what could they contribute that would take enough off your shoulders to matter?
I remember from both child-rearing and caregiving years that the constant strain came from being the lead provider. You are never quite off duty. If there is a gap to be plugged, you are the first on call. If there is a problem, you are expected to solve it. If others don't necessarily expect this of you, you expect it of yourself - and it is *never* off your mind. So even when you're at work, or away, or asleep, the responsibility falls on you.
If you are to avoid your illness becoming incapacitating, you need to take your health seriously and make that your priority. You cannot do that and continue to be your parents' primary caregiver - as they say: "if you have more than one priority, you don't have any."
Would you consider at least an interim placement in a facility? You could present this to yourself and to your parents as...
#1 extended respite while you get your diagnosis and health regimen sorted out
#2 a trial period to see whether your parents might benefit from the wider social circle and range of therapies available in a facility
#3 a sensible step in their care plan, on the grounds that they will have a better chance of thriving if they walk into a facility instead of being carried in
... and it is, of course, a combination of all three. Have you researched facilities in your area, been to have a look at any?