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Topic Don't know what to do about Dad... (long) Go to previous topic Go to next topic Go to higher level

By HappyPuppy On 2011.04.10 13:31
I apologize that this is a little long – I need some direction about my Dad – maybe I need a social worker…? I won’t make additional posts this long – this is our current situation in a nutshell and I don’t know what to do.

I’m in a tough spot as I am just learning about PD and how to help my dad but he gives me no feedback at all and will not or cannot become involved in his own health care, state of being or future. I just asked him today to give me feedback about his meds kicking in or wearing off and as typical of him, no response. I will be the first to admit that I have a LOT to learn still and have found a couple of forums like this that have been invaluable (thank you!)!

My predicament is that I’m sure his meds are not yet ideal but I don’t know how long to try what except by observing him. He falls a LOT so I think his meds need to be tuned unless falling is part of the nature of the beast regardless of med accuracy…(?) We do not yet have much of a relationship with his neurologist and I am trying to educate myself more so I can help to steer better. I think we may need a movement specialist instead of the standard neuro that we have...

Dad has lived in a senior community apartment (with meals and light cleaning provided) near me for about a year and a half but I have had to hire a pill-giver/shower-assister as Dad doesn’t do either by himself. Dad is starting to need some help changing pants and socks but I have been trying to keep him as independent as possible – but he will sit in wet undergarments for hours/overnight. BUT I feel like it might be time for more help --- tho I also think we still need to get the meds more finely tuned, which may extend independence.

Dad (diagnosed approx a year tho was symptomatic for a few before that) was started on 0.5 mg of Reqip three times a day, which was increased to 1 mg. He started falling nearly every day, and after a PD support meeting, we had a neuro appt and I suggested we try Sinemet 2 weeks ago and was immediately prescribed 25/250. This, however, seemed to cause some scary-to-me effects like drifting off with eyes open and spending the nite in the wheelchair with wet undergarments and saying things that did not make sense – and calling 911 because he was stuck on the floor instead of calling me @ 4 minutes away. We have cut this doseage back to half for the time being and may slowly ramp back up to something higher.

I am incredibly torn regarding whether or not to bring dad into my home – but the biggest problem in our situation is that my husband and love of my life is the about same age as my father (early 70s) and I feel like he deserves some peace and quiet during his own retirement years. My husband is a type-A neat freak and I am already cluttery (which distresses him), so I am reluctant to change our lives so drastically. However, I am all Dad has as his only child; he and mom divorced when I was llittle, so I do feel obligated to do everything that I can....

Dad already has had a bit of a complex about my husband and I have a feeling he will become rude and disrespectful to him over time within our home. We could deal with that, probably, as it would be the disease and not him but it would make things very hard as DH already does not want to help much since Dad appears not to be trying at all – tho DH is fairly supportive and has even entertained the idea bringing dad home. The logistics, however, are another story.

I don’t know how to determine when Dad really needs a next step in care and when his meds are optimized. I cannot tell if there is dementia or if Dad has just given up on trying at anything or if it is the meds. I do not think I have it in me to be full-time caregiver – we don’t even cook or eat dinner some nites… and are trying to start a new business, which is keeping us very busy at our home office. And if I were to go away to see my mom for a weekend, I would not ask DH to do any caretaking but there is no where for an overnight care taker to sleep… DH and I had some serious talks last nite but I don’t know what is best overall – if DH was my age, I would probably have fewer reservations about bringing Dad home but our situation is a little different than most. I don’t even clean my own house regularly so I don’t know how I can keep up with the additional and significant responsibilities.

Another thought about bringing Dad home if we went that route is whether or not to consider doing it now, when there is ‘more of him’ in there or waiting until farther down the road when there could possibly be ‘less of him’ to interact with. In some selfish ways, I don’t’ want our house smelling or looking like his apartment (tho that could be dealt with) or for him to assume I am his ‘personal servant,’ which I have been resisting as he is already showing some inclinations toward. Ideally, I would like an attached mother-in-law suite but alas our house only lends itself to going ‘up’ and I’m not sure if we can really afford it. All Dad wants to do is watch TV, so we do not have a lively and active relationship/situation, even when he comes here, he goes straight to the TV – so I cannot tell if he would be happier here or anywhere as long as he was getting help with things.

I have only been in ‘support/clean-up’ mode for the past year but am just now realizing that there is a lot of ongoing fine-tuning that can and needs to be done with this disease and its meds. Reading every day of real-life experiences on these forums has been so informative and provides so much more info than the informational books I have found. My PD for Dummies book just arrived yesterday, BTW.

I am so torn about what to do with Dad and my own capabilities. I don’t know what I am really asking here except how to know when it is time to make big(ger) decisions. I am leaning toward hiring more daily help at the moment but I’m all Dad has so that makes me want to have him here even tho the situation is not what I want for my husband’s sake...…..................Help?

By HappyPuppy On 2011.04.10 13:32
(Oh gosh, that was long -- I azpologize) !!

By Pearly4 On 2011.04.11 10:04
You are to be commended for your desire to help and willingness to learn about the disease. I started a more specific reply, but every Parkinson's situation is so complicated. You need to balance your own life and your father's care -- eventually caregiving can become all consuming and that balance is very, very fragile under the best of circumstances. My mother lived with us -- I had a very compassionate and caring husband who was willing to give up a lot to help me and her. But eventually I had to plan an early retirement to care for her even with ongoing outside help.

None of the above is to be taken as a recommendation for moving him with you -- nor am I discouraging it if its the path you AND YOUR HUSBAND choose. Outside care sources can be increased, financial assistance may be available through insurance, Medicare, Medicaid, or even free in the case of financial hardship. We turned to an outside source to help us make the same decision - we met with a worker at Aging Resources (state aging agency) and through discussion with they, her outside care givers, day care agency, and others, we made our decision as to whether she was able to live alone any longer or not.

Beware -- there is no one right answer to question of outside care, living situation etc and you will always wonder whether you made the right decision or not!

By lvmymom On 2011.04.25 17:37
Well if you simply look at things as they are now ... One, you are happily married and committed to your spouse and Two, your father is at a care facility. Everything seem s okay except for the CARE your father is getting at the facility. That should be your concern. He is left to sleep in his wheelchair all night in wet pants? MOVE HIM.... there are excellent care facilities out there with people who care very much and with policies that would never allow such a thing.

Because you have lots of questions why not call in a specialist with your County to talk with you ... Social Services will help you decide to have your dad with you and your husband or move him to home-care or to an assisted living facility ... they work with area families/facilities and will be able to guide you in the correct direction.

It is ultimately your decision, but guidance is a wonderful thing because there are so many facets involved that you are probably not even aware of. Work with a trained County Social Services Counselor. Soooooo helpful. It will make you feel better and shed light on the whole situation now and for the future.

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