How do you cope with the waiting game?

Hi Julie
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?

He has seen his GP recently and the doctor says his heart rate, blood etc are ok.
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.

I'm inclined to be a little ticked off at your doctor - it a younger man was presenting with those symptoms I have no doubt they would be digging a little deeper to find out what is wrong. Yes, 90 is old but it is becoming much more common for people to live well into their 90's and beyond, a person without any previous health difficulties should not be feeling as he does simply because of age. Have you asked your father what he wants to do at this point, whether he is willing to push harder for answers?
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.

So, Julie, I just read you're profile. Your husband and home are Turkey but you're currently in the UK caring for your dad. His doc says he's fine, although dad is getting frailer and is short of breath.

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!

Julie
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.

HI, Julie.

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.

Julie
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.

Have you considered calling Hospice? It seems as though he is in need of supportive comfort care and is not interested in intervention.

What would be happening if you weren't sacrificing your life to be there with him? I know that every country has different healthcare systems but I doubt that the UK is allowing little old men and women like your father to fend for themselves when they haven't got a built in caregiver, somehow you've got to tap into that system and get them to understand that although you love your father your life is in a different country and you are not available to give up years of to care for him. Perhaps it is time to consider some type of long term care facility.

When was your father last examined by a doctor?

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.)

Julie, I've just read some of your responses, e.g.

"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.

I read that you are fearing a wheelchair maybe in his future. My advise is not to fear it, but think positively about it. When Mom was still in IL in her late 80s she was on a walker but just couldn’t walk very far or over uneven ground. It made trips to the doctor or fun outings very difficult for her, so she didn’t want to go. We got a foldable transport wheelchair (but one with big rear wheels that was good on gravel and grass) for $100 and we could fold it up and put it in the car trunk for outings. It was a wonderful help to get her outside of her apartment. Maybe he would feel more inclined to do something if it wasn’t such as struggle.

At the moment Dad uses a stick; although we have got a walker in the garage, he doesn't want to use it and says he can manage. I suppose he will have to get used to the idea of a wheelchair. I will talk to him about it.

Any luck getting hold of anyone, Julie? Just checking in, hope you're okay.

sounds like he still has a few years left since you mentioned he can still feed and dress himself.

Has he been to see his doctor recently? I am thinking he has something going on with his heart - because you spoke of being out of breath and feeling so fatigued. Perhaps some meds will help him get back on his feet. My mother has chf (congestive heart failure) and she recently had an exacerbation. They had to put her on some stronger meds to clear the congestion from around her heart and lungs. (Diuretics). Has he ever been diagnosed with something similar to this? My mother was still bathing and making small meals for herself - but with great difficulty! Now she is doing much better. Please have him checked out.

He sounds like my aunt for more than a year before she died.   Elders have different ways of dealing with pain, less energy, acceptance of approaching death, etc. without also dealing with brains that don't work like they used to.  I suspected this, but it really helped to have feedback from others who actually saw her in action at home (hubby and a hired companion were observant and verified what I was thinking).

Sleeping more, not eating could mean he has started the natural dying process. If you’ve taken him to a doctor and nothing is “ wrong” , I’d guess he’s right. Accept it, make him as comfortable as possible and his last days as easy as possible. Eventually, our imperfect bodies wear out.

I've taken care of the elderly all my life. This sounds like the dying process has already started.

"If it works - don't fix it!"
Your father is very lucky in that he does not appear to be suffering. He has his reasons about dying. Let him die!

I think your father is probably in need of a medical check up. It amazes me that he is medication free at 90. But from my experience (I have been a caregiver for many family members over a 17 year span) my guess is his heart is laboring.
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.

Hi Julie,

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.

julie -how are things. A visit to the dr, would be good. Your dad could probably be prescribed something to help him with the anxiety and be assessed for additional care or hospice. Looks like he is winding down and that is hard to watch,

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))))))

Julie - went through same with my Dad but he loved sitting out in the sun on his back deck. You might try calling Elder Services in your town and ask if they have
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.

He may very well be exhausted. A trip to his physician is in order just to check. God bless YOU.

One of the problems with inactivity is that it leads to more inactivity. My mother used to harp on my father about use it or lose it. Dad sat a lot. Now try to tell her that! In her case, it led to weight gain. Still eating and getting around ok (had to start with walker a year after moving to MC unit), but she sits a lot reading magazines and sales flyers (her favorite hobby!!!)

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.

First of all, I could not and would not tolerate this behavior - it would make me insane. When the behavior of "patients" around you is starting to affect you very negatively and causing untold stress and harm to you, then you have to find a way to remove them from the premises - that is not cruel - it is pure sense and you really have no choice. Find a place to put him because he is not going to stop doing what he is doing.