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Topic How do you take care of the Caregiver? Go to previous topic Go to next topic Go to higher level

By dkleinert On 2009.10.26 02:13
Over the last 5 years since we have known my husband has PD, I have been on a slow personal care decline, settling for less in so many areas of my life, and this week I had to take a good look at myself and realize I now take 2 minute showers (never a tub bath), rarely do all the special personal things for myself I used to do, don't exercise hardly at all except for running, literally, doing so much 18 hours a day......and I began to wonder about all of you......how do you cope? I don't even recognize myself in the mirror anymore.....stopped highlighting and having my hair cut and styled 'cause I didn't have time for the appt and no longer had the money, stopped manicures and pedicures occasionally, no massages, no new clothes, no social life at all......

I am not complaining or venting - really I am not - I just took a hard look at myself after a friend who I had not seen in awhile said they didn't recognize me....I really don't want anything other than your comments about how life is for you and how you cope and take care of yourself or don't, day to day.

People are always telling me "You have to take care of yourself because no one else will", but when????? A couple of weeks ago I started going to bed earlier (until tonight) and getting up earlier hoping I would be more efficient, and now I am not as far behind on everything as I was, but I feel more tired now.....

What suggestions can you make from your own experience and where you are today about how you take care of yourselves or you don't???

How do we stay healthy? Will there be anything left of us when we are alone? Ann - how is it 2 years later?

By Emma On 2009.10.26 10:26
Donna, first let me say that I know you're not complaining. I worry about people having that perception too; when we get a chance to vent or ask questions it can seem like it's all me ,me, me, but it's not. We all have great concern and compassion for our loved one with Parkinson's, but the disease impacts us as caregivers too and this is our place to let that out.

As far as taking care of ourselves, I don't know the answer. I get real annoyed when I read articles or have people tell me "you need to take care of yourself, you need to make time for yourself", blah blah blah. How the he** are we supposed to do that? Who is going to take over for us while we luxuriate in this time we need? It doesn't happen.

Like you, I no longer get my hair done (a quick 10.00 cut at the supermarket salon is the best I can do now), I never wear makeup and I haven't bought any clothes in years ... no time to shop. When I do have to go out in public is when it hits me and I'm embarrassed by my appearance. Being tired and stressed doesn't add to the glamour factor either. Last year when my daughter was pregnant she actually arranged to have a friend of my husbands take him out for lunch and she took me to get a manicure. It was heaven on earth to have an hour alone with my daughter and be pampered. That manicure lasted almost two weeks and I looked at it every single day and felt uplifted. Such a simple thing, but so difficult to do.

When we got the medical alert system I thought that it would free me up a little to leave the house and feel that there was some measure of safety. That hasn't happened. I'm still afraid to leave, and, more importantly, I feel guilty when I leave. As hard as it is for me to get away, he is trapped here. He can't drive and is at my mercy so I hate to leave him alone, it doesn't seem fair.

I don't have the answers you're looking for, but I hear what your heart is saying.

By Mary On 2009.10.26 12:52
dkleinert, I feel your pain. Others tell you how important it is to take time for yourself and have "balance" in your life but it is not possible. It is just not possible. Dad is no longer in my care. He has moved to a Veterans Home in that he needs 24/7 care that I am unable to provide. Toward the end of my caregiving, I felt I did not know if I could do it one more day or even one more minute at times. Caring for Dad consumed me. All else took a backseat. My only suggestion to you is to look into nursing home care. Just start checking it out if you haven't already. So, if you do reach the end of what you can do, you have a nice place picked out. Hugs and blessings to you, Mary

By dkleinert On 2009.10.26 13:12
Emma and Mary: Thank you so much......thank you for being so vulnerable and for not blaming me for asking about me. Emma - I feel the same way as you....when I go to work I worry for the 10 hours I am gone 4 days a week, I feel so guilty just stopping at the post office or grocery store on my way home, because as you said, my husband is trapped at home because he can't drive and we live in the country, so no public transportation even though I am kind of glad about that...... You are right - it is when I have to be around people who are strangers or friends I have not seen in awhile or show a house or meet a new client (one of my 3 jobs is I am a realtor for 16 years - even though a partner takes most of my clients now because I can't take anyone in my old car (without A/C), and I can't meet all of their needs with my other jobs and taking care of my husband) that I feel so embarassed and self conscious. I wonder if an old client I showed a house to recently realized I have the same car and same clothes as when I sold them their house 5 years ago....and my car was old then....Vain things like that....how can I expect them to place their trust in me to help them when it looks like I am not successful myself....those types of issues....... I used to be a fashion plate, manicured, coifed, etc., but now ....... My 3rd job I do from home, so I am grateful because at least I know I am in earshot of Joe and my stress level is lower, just now worrying about him. So glad for your great support and care taking the time to write.

As far as nursing home, I only wish I could even consider it - I don't think that is an option for us. Saw an elder law attorney last year, and from what he said, because Joe's SS would stop coming to me and would then go to the nursing home, I would lose our home - I would not be able to make the house payments on what I make - our only real asset - and then what would I do......a real problem, so I will need to keep on so I can hopefully continue to handle this at home - I am hoping the relationship I am building with the Home Health OT and PT and Social Worker will carry over when Joe needs more skilled care and hopefully our Neuro doc or GP will write the orders......am I dreaming - will that happen, do you think?

Again - big hugs to you both - you gave me the boost I needed today. I am cheering for you also - we CAN do this - I consider you are dear, dear friends.

By Mary On 2009.10.26 14:32
Dear dkleinert: When Dad was in my care, I thought about him 24/7. I went to work and home and did errands after I made sure someone was available for Dad. I did not do anything "fun," unless it included Dad. Toward the end of his time at my house, we were unable to get Dad out. It was physically difficult (impossible for me alone) and hard on him. He did not want to go anywhere any more, so neither did I. I just couldn't. It did not feel right to leave Dad home while I had fun. Also, there was no time for fun. Caring for Dad was extremely time consuming so when his needs were met, there was other work to get done around the house. I was exhausted 24/7. I understand all you are going through and on top of that, you have no answers, it must feel like there is no end in sight, and that is overwhelming. I pray you find the answer to help you through this very difficult journey. Hugs and blessings, Mary

By caregivermary On 2009.10.26 14:37
thank you for asking this question.

last night i started to feel very sick-nausated, balance off(vertigo?) but forged ahead anyway with the evening duties. Woke up this am at 7 for PD pills feeling just as crappy as last night. I could bearly get out of bed without falling over. Again, up to start the day. I fortunately have someone coming to assist my husb with bathing, grooming, etc. but I fixed his breakfast and lunch. I kept going back to my bed but staying awake to check back in on my husb. Once i had him in his chair for a morning nap, I was able to sleep for about 30 minutes. I feel a little better now but not great. Unfortuately, the two friends nearby that I have on my list to call aren't available today. Why did this happen when no one was available to help me? Funny.

We are all in the difficult stages of this disease. I am trying to find ways to have a life but it isn't easy. Guilt is tough. Seems like something always happens to change my plans. Making the most of a situation is easy to say but I do try.

By Pick On 2009.10.26 16:37
I certainly don't have any answers, and I definately don't consider myself a model of success in this area, but I do think things have gotten better for me. I still wear sweats almost all the time (none of my nice cloths fit after all the weight I've gained and I don't have time/money to buy nice new ones), my cholesterol has crept over 200, I have little time/money for socialization, haven't been on a date for 5 years, etc. However, today I can say I finally have health insurance again, I'm back in school fulltime and tomorrow I start working out with a personal trainer. For me the turning point came....and nobody has mentioned this yet..... when I finally realized that if something happened to ME there would be nobody to take care of HIM. So, know that first of all noone is doing their loved ones any favors if they neglect their own health (physical as well as mental). In fact, a significant portion of nursing home admissions are directly related to caregiver burnout. If you won't take care of yourself for your sake, take care of yourself for his.

I hope you won't take that as preachy....I'm being honest when I say realizing this really helps me. It helps me make tough choices such as choosing to stay in a hotel for 2 nights after I got the flu last month. Even though hotel rooms aren't in the budget (far from it!), I knew if I didn't get a good night's sleep soon I'd be unable to help my dad go to doctor's appointments, I could make errors dispensing his meds, he could end up catching my flu, etc. In the end he did end up catching my flu and developing bronchitis, unfortunately. I got him to the doctor and he's ok now but who knows...if I had been exhausted I might not have gotten him to the doctor in time and maybe he would've developed pneumonia (for the record, my dad, like many oder aldults, developed bronchitis without fever or significant cough....so it is very likely an exhausted caregiver could miss it).

I wish I had more practical advice but I simply don't know enough about your situation (and even if I did, we all know what free advice is worth!). In my situation the money was there, my dad was just unwilling to spend it to hire outside help when he could get help from me for free. It took many horrible months of tears, yelling, lawyers, ultimatums, meetings with social workers and finally threats (for lack of a better term) to contact adult protective services if my dad refused to hire outside caregivers. Plus I had to learn to stand up for myself and he had to learn to do without some things.

By Pearly4 On 2009.10.26 16:51
My basic problem was guilt just like everyone else -- how could I be out getting a pedicure or having dinner somewhere while I knew my mother was home wishing she could go with us?

We found a source through Aging Resources that helped us get an aid -- in her case, her Medicaid paid for it, but there are volunteer agencies who will provide respite care on a case-by-base basis. The last year my mother lived with us my husband and I were able to get out of the house for 3 hour intervals once a month or so. The first four years one of always had to be here or we left for no more than 45 minutes at a time and encouraged her to do nothing but sit in one spot until we got home. Gradually we found the aid was able to walk around the mall with her in a wheelchair or get her out to eat while we went elsewhere and we took advantage of that too for shorter breaks.

It's almost as hard a job finding someone to assist even if you can find a way to pay for it, as it is to take advantage of it. She died last June -- there is life afterwards, but its still something I have to work at making myself do for myself.

By lbellomy On 2009.10.26 20:56
Donna, I am in about the same boat as you. But...I prefer showers anyway :) I cut my own hair and my husband's and did that even before he got sick. I read somewhere in a caregivers list on taking care of yourself (was that here?) to change your clothes every day so I do a mental checklist to be sure I do that. Even if they are my grubby clothes. Make-up, what is that? I have often wondered when people say take care of yourself - HOW? Okay, I have said enough.
Lorraine

By annwood On 2009.10.26 22:37
I wish I had some magic bullet to help you - it is so very, very hard. Reading your posts takes me back two years when I was in the same situation. A shower is a luxury, a trip to the grocery is a vacation and all you can think about is what would happen if I just kept driving. I look at pictures of myself then and cringe. At the time I really did not know if I was going to live through it and whether or not there would ever be an end to it. What had I ever done to deserve this and as you said the advice to take care of myself was wasted because there was no way. I remember the comment that made me the angriest was our priest who told me that I would learn a great deal from caregiving. It turns out he was correct but I did not appreciate that until after my husband died. When this is over you will know who your true friends are, what is really important in life and you will have the knowledge that you gave all of yourself for another person. I think that it took a full year for me to rest and come to grips with my loss and at the same time my relief.

That being said, what can you do now? It is true that you should try to get SOME time for yourself. Everyone's situation is different but is there a friend or family member who can watch your loved one for 2 or 3 hours a week? Just getting away from the house for brief periods helps immensely. If you can afford help - get it. Some places have volunteers that will sit - try your council on aging or churches. When people say let me know if I can help - take them up on it and give them a specific task. Cook a meal, go to the grocery, sit. Can you get Hospice involved? Remember it is for anyone with a progressive illness. Call them and ask for an evaluation. If your loved one is eligible Hospice will contact the physician and ask for a referral. Hospice has a respite service where the patient can spend a certain number of days there to allow the caregiver to rest or do something else.

Streamline as much as you can. Don't worry about cleaning - the dirt will wait for you. Don't take on family events or dinners. Catnap as much as you can. Find something funny - this is very important. I used to listen to the opening monologue of one of the late night talk shows and it helped.

All I can tell you is that eventually this will be over and you will have a life again. You will have to go through a lot to get there but it will happen. We are all stronger than we believe we are.

I think you will find much comfort here on the forum, I know that I did. I question whether or not I could have made it without everyone here. I would sometimes get on the board at 2 or 3 in the morning just to "talk" to someone who understood.

By lynn On 2009.10.27 15:15
I think the key is finding an activity which is relaxing and another that gives you a total diversion. Going to the beauty shop is typically quiet and you get your hair done. For total diversion I prefer a funny movie out not a DVD at home. Lunch with friends used to be fun but you end up talking about PD. I'm at the tough part of the disease with my hubby-constant falls, injuries, dementia,etc. Anyway, just try some things to see what works for you. By the way, don't put off adult day services even if just for one day a week. I listened too much to my hubby.


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