Caring for a spouse

Hi Daisy,

Welcome to Caring's groups.  I'm really glad you found us and posted.

I'm going to agree with you here...you're in a good old-fashioned pickle.  My mom is my dad's caregiver and I've talked with her a lot about how their relationship has changed from being a partnership to something more along the lines of a patient/caregiver interaction some times.  That's frustrating in the best of circumstances, but it sounds like you didn't have the greatest circumstances to begin with. 

Have you considered having some in-home?  You may also want to contact your local Alzheimer's Association.  It's possible they have active support groups in your area. 

Keep us updated! 

Hi Daisy -- I agree with Missy that you need some support. Your situation sounds really tough. I'd also recommend trying to find a caregiver support group in your area -- your physician (or your husband's) or your local hospital should be able to give you names and contact information; I hope some other caregiver spouses will join this group and share their experiences. Good luck and keep in touch.

Thank you for you response. I have tried to find local groups in the area with out any success. I am still looking. Hopefully I will come across one in the near future. In the meantime I am busy trying to get my life in order so I can be whole person again.

i am glad, i finally found this site , a site that will eventally help me with the rough situations in my life. and i really do hope i would find the help i need to clear off the mess in my life.

My husband has Parkinsons disease and I am the only caregiver.  I find it very difficult to know when to take full charge and when to let him do as he wishes.  His signals to me change constantly.  Sometimes he wants me to do everything and at others he is resentful of me taking charge.  Some of this is his natural personality and I know some of it is the disease.  He is often obsessive about something he wants to do and I have trouble talking him out of something that is impracticle for us to do or too expensive, etc.  He then sulks and gives me a hard time about it.  I really am afraid of what the future holds for me.  He will explode over nothing and out of the blue.  I never know what will set him off.  Does anyone else have these kinds of issues and found a way to cope.  We have been married 58 years and it has been up and down over the years.

Hi mls, what a relief to hear from someone else that is having some of the same problems I am having. The anger is a hard thing to cope with. In my case and probably in yours too, they just do not have the capability to think clearly about what they are requesting or about how they would like things to be. I resent being put in the position of having to be the one to put up with this situation and I think admitting it is half the battle. I am human too and just do not want to always be mellow and say to myself  "it is just the illness and he cannot help it".  I can admit that too. I called his brother and asked if he could come and stay with him and his girlfriend for a week to give me a little respite and what a mistake that was. After hearing what an awful person I am (his opinion, but then what does his opinion mean to me.....NOTHING). I hung up on him. The brother would not help with their father when he went thru the same thing so do not know why I even wasted my time calling him. The care of the father at the time fell on my husband and his wife at the time. I was not in the picture at that time but did hear about it. I am going to refer to my husband as H from here on, H has never had any children and no other relative except his brother and a sister who is wheelchair bound and lives a long way away from here. He has no one else but me but still I really resent this. I have children who will care for me when and if I get to this point. Thank God for this fact. I know I was not much help, but it has always helped me to know others have these same feelings.

Hi Daisy 3rc, It felt good to just vent this morning.  I had had a bad time this morning and it just hit me wrong.  I am lucky to have 3 children, but they don't live near, the closest is 4 hours away and all are very busy with work so are not much help.  My youngest, the only girl is actually more of a hindrance, she keeps trying to tell me how to handle things and is very bossy at times.  She now thinks she knows better than me.  I am a naturally the take charge type and where I should let up on that is a constant problem.  Thanks for answering so fast, it is good to talk to soimeone else, i have not been able to find a support group that is in my area.  mls

Hello again mls, I too have not been able to find a support group in this area either. I can relate to how your kids are...mine are workaholics too. Seems like that is the way it is in this day and time. My oldest is a girl and it makes me sad to see other mothers out with  their grown daughters having a day out together. Sad for myself since my daughter lives so far away. Ten hours away for me. My sons are closer with one that lives a couple blocks away but he is starting a new business and does not have  much time for anything except that right now. His wife has a job that requires a lot from her and even my grandson at the age of 10 is involved in a lot of activities. I will add that if I need my children, they are there for me though. I have noticed one thing about them, they seem to look at me as I was when they were home with me. Cooking, sewing, cleaning and all those things I don't do much of anymore because I don't have to....lol. I do have a part time job that keeps me sane, just hope H does not get so bad as I would have to quit the job. I have looked into placing him in assisted living but we make just a little too much to qualify for help from the system, but not enough for me to afford to pay for it. I have found out that is the case for a lot of us seniors. If only we had fore sight instead of hind sight.  Daisy