I've got Caregiver burnout!!

[laroux]

I am pretty well spent. I get up 2,3 and sometimes more at night to help my hubby to the bathroom. I get up in the morning and get his meds in him, start getting ready for work, get him up and dressed and get the tube feed ready, finish getting myself ready and off to work. Homecare comes in and finishes the feed for him. and give his mid morning meds. I have 40 minutes at lunch, come home to eat and give him meds and either get him up or lie him down. Back home after work, get him his meds, get supper ready. Then every 20 minutes or half hour he needs up or down or help with something until 8:30 when he gets his bedtime meds, but he doesn't go to bed then, he wants to eat icecream, or porridge, or yogurt. It takes him a long time to do this, I'm tired because I've been up several times during the night and been at work all day. Finally by 10:30 or 11:00 he goes to bed, then I can. And it starts all over again!! I am so tired all the time I just want to cry, or go hide somewhere! Home care also comes at 2pm to administer a tube feed while I am at work. I don't know how long I can keep going like this, I know I need to take a break and get him in to respite care for a few days, how do I tell him that?? I am exhausted!!

Thanks for hearing my rant (:

joan

[CarlaL48]

How do you tell him that, Laroux? I think you just have to tell him straight out, but gently, looking to him often to gauge his understanding as you speak. Of course you are exhausted, not only from all you do but also from the mental and emotional weight of all you do. You must take regular breaks to recharge your energy and your soul.

My husband knows and has verbalized that he needs me to take care of myself because if I stroke out or have a heart attack, they might as well put him in the ground along with me.

Start planning your respite now. It will give you something to look forward to. Talk lovingly to your husband, and let us know how it goes.

God bless,

Carla

[carolinesimmons]

I didn't think I would find anyone who had it worse than I do! God bless you. My husband is on a continuous feeding tube and gets all his nutrition from that. He is totally incontinent and can barely walk with a walker - just to the bathroom and back. I help him go (disconnect the pump, flush his JPEG tube, put on clean brief, etc.) each time - every 2-4 hours. I cannot go anywhere without having someone here with him and the costs are really high. I am also up 3-5 times a night so am always tired. My husband's sleep pattern is to sleep until 10 a.m., get up, get his meds, go back to sleep until perhaps 2 p.m. when he watches old movies on TV until his bedtime at midnight. I sometimes get an afternoon nap. I don't know how I could find time to work as I spend hours on the phone and the Internet ordering supplies, medications, questioning insurance, arguing with utility companies about bills, so forth and so on! But tragedy forced me to put my husband in a nursing home for 3 days (private pay) so I could go to an adult son who was extremely ill. Funny how I could do this for my son with no second thought - but not for myself! I think it will be easier to do the next time and I think I can say to him that it is for my sanity. This next time however I will bring in a caregiver rather than take him to a nursing home. The cost is just about the same and he would be much happier.

I don't know what to advise you. I assume you need to work - whether for the income or the sanity of being away a few hours. I am 73 and would like to "have a life" but am committed to my husband's care for as long as I can provide it...as I'm sure you are. Keep us posted on how you get along with his care.

Caroline

[SharonAB]

Dear People,

Do not make the mistakes I made. I did not take respite when I should have. Thought I would take 'time out' when I needed it. But couldn't decide when that should be, how to break the news and when I finally gave myself a little 'time-out' I wasn't truly doing so because I emotionally and physically drained so much to begin with!

Let’s face it, we should be able to rationally judge for ourselves when we need a bit of breathing space. However, the reality is when you are caring for someone with PSP, and so sleep deprived and concentrating on being there for others you do lose touch on how much is 'too much' for our own minds and bodies.

Therefore, my strong suggestion to you is - book/arrange some dates in advance. Think of some dates for the next six months. (I know if you think of your next 6 hours there are things planned for now that may not even happen!, but that is events of now - not what you will plan in advance because you need it!) This is one area I strongly believe in - treat your time as your own 'mini goal'. As a close friend recently pointed out to me - we all need to have the three S's - "Sleep Soundly Snoring" to get sanity back into our lives!

Regards,

Alana - Western Australia

N.B. To begin - "Block in" some appointment dates with your initials on the calendar or diary that you use - Yes, It is probably cluttered with Dr's appointments and the like, so if you need be think of your ''timeout" as a medical appointment well do so- after all it is for your body

[ultramodern]

PSP Caregiver Burnout....I hear you loud and clear laroux and carolinesimmons...and anyone else in the same dramatic situation as primary caregiver.Husband or wife or relative looking after a loved one with this unjust malady.

Having to get up several times in the night is a killer....why not ask your Doctor to prescribe a mild sleeping tablet for the patient.....and night pants.

Please,please,please I beg all carers to remain sane an instant and ask yourself "do I want to make funeral arrangements for my loved one...or for both of us?" It's that serious.

I'm speaking from experience ..I didn't get to go to my wife's funeral...I was busy having heart surgery for problems I ignored because was too involved as well.

Take care....all you caregiver heroes.

ultramodern