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Veteran caregivers: Your best survival tips please.

18 years ago

Hello all. I have been reading this forum for about a year as I have been primary caregiver to my 93 year-old FIL for about 5+ years. Up until December he was living in his own home and just last year stopped driving. My MIL died 5 years ago, and DH and I had been active in caring for both of them while she was suffering from dementia/alzheimers for a few years.

In December, FIL went to the hospital with shortness of breath and after being admitted, went down a slippery slope to the point where we thought he was going to leave us on Christmas eve. He bounced back, went to a nh for rehab, back in the hosp for a few days, back to rehab where he did wonderfully to the point of being ready for discharge. He has daily care needs and cannot get around alone at all, so living on his own is no longer an option.

He is now here in our home. Without getting into the personality issues, I can say that we have successfully navigated the first week. I am handling the changing and emptying of the catheter, med distribution, daily chair-exersizes, bum-wiping, bathing, cooking, laundry etc. He is weak somedays, more vibrant others. DH helps with all of these things when he comes home from work and on weekends and we know we are a good team. I thinkit is easier for me since he is not my Dad. Harder for DH to watch him decline and to have him sleeping in the room below us. We don't sleep through the night, as he needs help to get to the commode at night and we can hear him trying to get out of the bed. We have been sleeping with one eye open every night. Last night was particularly bad as we were worried that his catheter was blocked.

My question is...if you could do it over again, what would you do differently from the outset to manage the whole process and maintain your sanity? I am finding that just after one week, I am feeling wrung out and a bit caged in.

We are an active family and enjoy sports and being with friends. All that is pretty much over for me since FIL cannot be left unattended for very long. DS who is 11 is a sweetheart and will keep an eye on him while I go to the grocery store or post office. They get along well and DS is very intuitive regarding the situation. But I can feel there is a level of energy drop in the house - we are all kind of on pins and needles wondering what kind of a day it will be. FIL is very frustrated with his loss of function and is becoming more agitated and restless every day.

He was given the choice to stay at the NH and enter as a full-time resident (at $350/day!) or to come home with us where we could care for him and he could be a part of the life of the family. He chose to come home here with us, but I know the transition is hard.

We have regular visits from visiting nurse (3X/wk) and PT (2X wk) and an aide - but their visits are brief and focused and I am needed to be involved with the work they are doing. So there is not a "break" there.

For those of you who have been caring for your parents or inlaws for a long time, what advice would you give? How do you deal with the feelings? I think he has taken me for granted... not just this week now that he is here, but for the several years that I have been caring for him when he was living alone. He is so demanding, which is kind of out of character but I can't really fault him. I think he resents me a little because he resents his condition (end-stage kidney failure that affects everything) and the loss of his independence.

We used to laugh and joke all the time and I was the one who could talk to him about issues that his children (7 of them) sometimes couldn't talk to him about. I can hardly get him to crack a smile now, and this darkness is hanging over our house. I wasn't really prepared for this. DH is convinced that he will live another two years, which some days, I can see, but don't know how I will survive! I will not be able to sustain this for two years.

I am tough. I can handle all of the pee and poo and assorted plumbing issues, but I don't know if I can keep up a happy house and continue to be his cheerleader indefinitely when he no longer responds. I don't want my marriage to suffer nor do I want my precious little boy to suffer.

How do you manage for the long haul? I am not a martyr, we are just the only logical place for him to be. Our home is physically set up for this. I should also mention that in addition to caring for him all day, I am also managing all of his bill-paying, health care management, legal arrangements and interface with all of his doctors. All but one of DH's siblings are out of state so delegating any of this is impractical. Also, all but one of them has serious issues of their own and are not in any position to deal with any of this.

The nearest SIL is a saint and comes faithfully every saturday (works full-time during the week). She has been 100% supportive and has taken on the role of communicator to the rest of the family, which is great for me because there is no room anymore in my life for dealing with their various dysfunctions (and occasional demands.... like earlier this week when one SIL suggested that we have a sprinkler system installed in our house in case of fire). We are already more than $150K into caring for his dad and not one of the others has ever mentioned this or asked if they could help. One had the nerve to give us the bill to be reimbursed for the Roto Rooter that he had paid for when he was visiting and it had to be done.

So fire away if you would be so generous as to share your wisdom.

What did you do that worked best?

What would you do differently?

Thank you all -

Trish

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