How do you cope with the waiting game?
I am caring for my 90 year old father at home. He is getting very frail, but can still just about manage to wash and dress himself although doing this leaves him exhausted.
He spends most of the day dozing and watching TV and only really wakes briefly to eat or drink anything I bring him. Often I have to remind him several times to eat or drink the things I serve him. He doesn't have dementia or anything and isn't actually on any meds. He says he is exhausted. Sometimes he is very short of breath and gets anxious about this.
Up until a month ago he went out but now he doesn't want to leave his chair so the only exercise he gets is walking to the toilet and to his chair/bed.
I am really struggling with the situation and the atmosphere of constantly being around someone who thinks he's dying and wonder how others deal with this.
Thanks
Julie
Certainly it would be good to see if there is a medical reason for his fatigue. Heart issues might require a specialist, not just a GP. Although blood work was reported as "OK", did you actually get a copy of these results? BP okay? Mine tends to be low and if I am not physically doing something, I can fall asleep while sitting at my computer! Could his iron levels be too low?
He may balk at appointments, but you just have to be firm about going! Mom complains she never gets "out", but when I arrive for appointments, I get every excuse and reason not to go and have to play "mom" and say comon' get your coat on, we HAVE to go NOW!
IF all is truly medically ok, again, lack of activity will breed more fatigue. If he is only taking the Lorazepam as needed and only a small dose (mom has VERY low dose, as needed for sun-downing, which isn't often), it shouldn't be a problem, but do beware that it (and other meds) can increase fall risk. I would worry more about the inactivity leading to weakness/falls than the medication though. Could he use some OT/PT, to get him moving more? Even some exercise he can do while sitting in his chair would be better than nothing.
As for eating, his caloric needs would be less than if he were more active, but if you can increase protein, iron, etc while reducing as best as possible processed foods, carbs and sugars, it might help. Certainly encourage eating and definitely enough liquids, but avoid forcing it.
a person who would "walk" him or do some PT with him or even just someone else who could sit with him while maybe you take a breather.
I guess it's just hard watching our loved ones go downhill - and there is not much we can do -- hope it gets better for you.
You are probably doing some anticipatory grieving - grieving the loss that is inevitably coming. That is normal but nothing about accompanying a loved one on their final journey is easy. Be sure to look after yourself and take breaks when you need them. This is a hard road to travel. ((((((hugs))))))
My mom is 93. I feel like you sometimes. I’ve even checked to see if she was breathing during naps. Suppose we can’t help but wonder when the end is near. I just want mom to be as comfortable as she possibly can be.
Just being old is exhausting. They are worn out. They should move around a bit. My mom loves her recliner too!
Couldn’t hurt to have additional check up. I don’t want many ER trips for mom because of exposure to the flu, etc. plus, it’s too long for her to wait that long.
My mom doesn’t qualify for end of life hospice care either. So it is a waiting game and it is emotionally and physically exhausting.
I hope things get better for you and your dad soon. Your dad is blessed to have a wonderful daughter like you caring for him.
I understand how you feel, though. My husband who has dementia thinks he’s dying if anything hurts or itches. The only relief for me is time away from him. So at the moment he goes to daycare 2 or 3 days a week (he cancels rather consistently). Caregiving becomes an endurance test in most cases. But once they have passed, they are gone for a very long time. And I miss each one every day.
Your father is very lucky in that he does not appear to be suffering. He has his reasons about dying. Let him die!
"In England there aren't really any geriatric psych services"
That is absolute RUBBISH! Yes, there ARE. Would you mind sending me a private message to say where you are? It does begin to sound as though your Dad's GP is a bit of a chocolate fireguard.
This "chocolate fireguard" was a new one! Thanks for a little chuckle!
The shortness of breath, markedly increased fatigue, excessive sleeping and inability to initiate eating and drinking sound a *heck* of a lot like a heart or brain problem to me. You say he isn't currently taking any meds; in that case this might be an acute issue that really good, useful things can be done about.
If you haven't already had him checked out, get on the phone to his GP and get an emergency appointment for today. (Don't ask your father's permission, because if he's feeling as knackered as he sounds he'll say no. Just do it.)
On the one hand, if I discussed this with him, he might manage better like this (for a while). As I have said before, if he has to fend for himself, in some ways it motivates him to do more (he has no choice). Because of his panic attacks I don't really want to broach the subject. It's tricky.
My husband is Turkish and in their culture they would never allow parents to go into care - but they do have extended families. He thinks I should be here with Dad for the short term.
i remembered responding to you earlier so I went back and found your posts.
So it sounds like he could get more care if he weren’t so healthy!
The doctor isn’t impressed enough with his decline to take action.
You were wondering if you have actually caused his decline by being there as you do the things he did before including taking care of his dog.
He has been treated for anxiety in the past. So it sounds like that is the same issue now. All things the same except he has lost weight and is weaker.
He needs an intervention of sorts. Can you see yourself taking him out to a different doctor? It’s clear to see you don’t want to go against your fathers wishes but the set up you have now has you being forced to witness his slow decline because he doesn’t feel like doing anything different. I’m sorry Julie but he appears to be mental and you are going along with it.
He doesn’t want you to go home and he’s making sure you don’t by becoming weak and helpless. You’ve been there about five months now and he’s not better. I hope you will insist that he seeks a second opinion in hopes of helping you both.
Dad is a lot worse than he was last year when I started looking after him but I don't think that is because I am here. He is a lot worse. I could get social services to come and do another assessment and they would probably recommend more care. At the moment a carer comes in 3 times a week for 30 mins. (Not much help really.)
I think you are right about needing an intervention, but in the UK there's not really much choice. The doctor offered Dad an abdominal ultrasound but he refused to go and I had to cancel the appointment.
Yes, the set up I have now is as you say 'forcing me to witness his slow decline' because he has given up. He thinks he's dying. I just wondered if that might be an intuitive feeling.
I am not sure that it's fair to say he can't be bothered and is making sure I can't go home by becoming weak and helpless; he really has no energy and cannot physically do things he did a couple of months ago. He sits slumped in his chair most of the day and struggles to get himself washed and dressed. I really don't think he'd be able to get himself in/ out of the car and go into a supermarket (which he could do a couple of months ago.)My husband was here last week and he would usually perk up and act as if he was ok as he's very proud. He just wasn't able to do that this time.
Do you have access to geriatric psych services? Or any psychiatrist?
My mom was like this. Long story short, she'd had a small stroke, which we didnt know about. She became panicked about everything. Wouldn't go out because of fecal incontinence but wouldn't talk about it with us or her doctor.
Her GPA just kept giving her antianxiety meds which she took only when feeling panicked. It's a bad idea. You need a higher dose and you end up with rebound.
Gerpsych put her on a steady, very low dose to get ahead of the anxiety. Eventually an antidepressant was added which was even better relief.
I want to emphasize that no amount of reassurance, cheering up, us being there or having 24/7 aides in the house helped.
Getting her the proper medication did.
I take your point about no amount of reassurance, cheering up really helping in this situation. I have tried talking to Dad about what he'd like to do - ie anything special he hasn't done but would like to do - anything special he'd like to eat etc. He doesn't seem to get joy from anything. I think his dog is the only thing that gives him any pleasure/ comfort.
Dad is not incontinent but has the odd small accident. Although he is a bit embarrassed by this, he does let me know. ie he tells me that he had a small accident in his pjs.
Perhaps I should talk to the doctor about the meds?
I heard once that an egg a day could keep elders from being frail. It seems to work for my aunt (92). If he is in no pain, I suppose he is doing as well as he can manage.
Perhaps spring weather will inspire him?
I am sorry you are still separated from your husband. It is difficult to live with someone who is lethargic and in decline without it affecting you. Try to get out each day and take a walk.
I wish I had a better answer for you.
Someone else has suggested eggs but Dad never liked eggs so I can only get him to eat one every couple of weeks!
My husband was here for 10 days and we worked on the garden as we thought this would perk him up a bit. We pruned the trees and planted bright annuals. It took a lot of encouragement to get him outside (once) just to take a look. This is mainly due to his fear of falling as he is getting very wobbly on his legs.
We also tried to get him out in the car for a drive, but he was adamant about not wanting to go out.
Yes, walking is good therapy for me. While my hubby was here we went for long walks on the seafront every afternoon. I am going to try and keep that up. It is very easy for me to slip into lethargic mode which doesn't help anyone.
You're asking about the "waiting game". Are you asking about waiting for him to die?
If you are looking at this caregiving in the UK as a temporary plan until your dad passes on, if there is no discernable (at least by his gp) illness, I'd say you might be looking at another 10 years. You want to plan accordingly.
What is the shortness of breath about? I'd definitely look into an O2 meter; is it possibly anxiety? Has he been seen by a psychiatrist for evaluation and possibly medication for his anxiety and depression? Has his GP evaluated his breathlessness?
Please let us know how this is going! We care!
Thanks for caring.
The GP send Dad for a chest Xray but it didn't show anything. Sometimes Dad's shortness of breath is due to anxiety and he has been prescribed Lorazepam. He takes half a tab if he feels panicky.
Apart from this, I have called the doc a couple of times and he just told me to call an ambulance if his breathing problems were severe. (Not very helpful>) A trip to the hospital could be more stressful for him and would probably mean a long wait in A&E.
I asked about the 'waiting game' because seems to have convinced himself he is dying. He has definitely deteriorated a lot in the last month and I feel he is fading.
Your father sounds a lot like my mother at 90 - she was also functioning reasonably well but she had a long history of cardiovascular disease and TIAs, as well as advanced AMD. First came the falls because of the frailty, then her mind started slipping, then she became incontinent, then wheelchair bound. The decisions I made early on were based on the opinion of multiple health care workers that she was imminently dying - one ass in the ER told me "sometimes they just get tired" as her diagnosis. It took the better part of a decade for my mother to finally pass away at age 99, by then she was as dependent as a newborn infant and needed to be cared for in a nursing home. My biggest regret is that I never pushed for answers earlier on and I'll never know what the heck happened to her or whether any of it was in any way preventable.
I fear for what comes next as with his dwindling mobility, falls are on the horizon, so are wheelchairs etc.
He has always been skinny but is losing weight.
Dad eats relatively well for his age. I also let him eat what he wants - he likes a lot of sweet stuff and processed ready meals but he has always eaten like this so I don't force anything on him (I just add some fresh veggies to his meals to improve them a bit.) I have to keep my eye on his liquid intake as he would drink very little if I didn't remind him.
He has been suffering from this fatique for several months now and the doctor hasn't found anything wrong.
At 90 your dad could be exhausted just by being 90. On the surface his symptoms sound like heart failure. When did he last see his doctor?
My mom had CHF and she found it helpful to use a oximeter. This showed her O2 levels as well as her pulse. Her O2 was always good so this reassured her to a degree. Many things could cause exhaustion.
Is he losing weight? If he declines food he will become more exhausted. It’s not good to force food or drink. But he will get weaker and weaker. At what point do you intend to seek medical help? Or does he not want help?