Am I being selfish for wanting to get away for a few days or having some quality date nights with my partner?


We are taking care of my 87 year old godmother, who I am her POA, and she has been like my mother my whole life, as my real mother was very ill since I was young and she passed away in 2003. I feel my godmother is in the early signs of dementia. Her father had dementia, and her younger brother just died from alzheimer's last year. She lived in an assisted living care/retirement center in PA for 3 years near me and I went to see her at least 2-3 times a week, but it was very expensive for the care I thought she was receiving, as I had to take her 4 times to the ER where she was admitted each time, due to the nurses at the retirement center did not notice she was sick! Since my partner and I are on SS disability ourselves due to chronic back problems and fibromyalgia, we moved to FL to get out of the Northeast cold winter months.

My godmother was never married, and her other brother only visited her 4 times in the 3 years she was at the retirement center, and her nieces and nephews never came to see her at all. When we decided to move, we never once thought of leaving her there by herself in PA, and since the bad experience she had at the retirement center, we decided to rent a house big enough for her to stay with us, and we have visiting nurses coming in 2 hrs a day to bathe and dress her.

Unfortunately, she has gone down hill very quickly and now needs someone with her 24/7. She has fallen 3 times and we have a monitor set up so I can hear her during the night if she tries to get up to go to the bathroom, but there are some nights she has me up 2-3 times and I am losing a lot of sleep. She got very upset with me when I bought side rails for her bed, as I am afraid of her falling. I have been so stressed lately, on top of my chronic back pain, I am now having stomach problems, which my doctor told me is due to stress.

I have family who just moved down here also from SD before we did, and they too were very close with my godmother years ago, but have not seen her in 5 years. At first they told me they would help me and watch her for us, but I feel since they see how she is now, they have been ignoring us and do not offer
any help. There are days I am ready to pull my hair out, and I hate to even admit it, but I am also starting to feel resentful as the only time we get out is to go grocery shopping or to Dr. appointments which means one of us stays at home with her, unless the appointment is for her. If I suggest to take her out with us anywhere, she tells us she does not want to go along, that she is too tired, or she wants to watch TV. I really do not want to put her in a nursing home, as I know she would not be qualified for assisted living any longer, and I am afraid of the quality of care she would receive, and yet if I take her to someone who does respite care, they want $120.00 a day, and with her already paying for nurses to come in everyday, it is getting very expensive! We just need some advise and help!

Thank You!

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You are not selfish. It's time to look into a nursing home. While it's true that some areas of the country have better nursing homes than others, with some checking you should fine one that is good. Visit them and don't just go on a tour. Watch the staff interact with the residents. You can learn a lot from that.

As getnstrong said, " Nobody wants to see the face of a "constant complainer" approaching their office, but a good nursing home is open to hearing legitimate concerns, and will address them."

So, place your grandmother and then be an active part of her care. Visit often and be visible. Make friends with the staff and only complain about real issues. Don't expect perfection but expect good care.

Do not feel guilty for what you are doing. Whether you pay for help to come in or place your grandmother in a nursing home, continue the care that you can give but don't destroy your own health.

Please keep us posted on how you're doing.
Helpful Answer (0)

Respite is necessary in the long run for sure...My wife was at home with me for two years after a massive stroke..she could not stand, was paralyzed on one side and could not speak...I had paid ladies come in for about 8 hours total a week....After two years my heart gave out...After that I was unable to take her back home and she has been in full nursing home care for the past seven years...I go to visit morning and noon and pay ladies to sit with her at the dinner hour...It is a handful for me but at the same time, most of the day I am free.
I learned that obtaining the right care is more important by far, than financial considerations...I don't want to be the richest guy in the cemetery..

You may be able to make an arrangement with your partner that each of you have a full day off each week until you make other arrangements.....24 hours contact with grams at all for the one on "break"...
Helpful Answer (7)

Are you in a caregiver support group? Is it possible to "share" respite caregiving with other members of the group?
Helpful Answer (4)

Are you being selfish? NO! you need to take care of yourself, it is important to you, your partner and your Godmother. Guilt is such a strange emotion. I read your write up and thought "what an incredibly giving God-daughter, she must love her Godmother very much" and I can't imagine anyone seeing this any different. If only the other family members would kick it up a notch, but don't count on it. If your health fails who does take over? another great reason to take care of yourself. I know you had a bad experience in the past with a care facility, but they are not all like that. I'd start searching for another place that meets your requirements. You matter!!! don't underestimate the importance of your own health. Good luck.
Helpful Answer (4)

No I find it very helpful and relaxing for me to get away from it helps me to clear mind body and spirit. I come rejuvenate and able to be more calm and a where of my situation. Don't feel guilty it's ok to be free for a while if I didn't have me time I be in a hospital myself.
Helpful Answer (3)

Regarding her going places with you, you may want to consider the possibility you could stop taking NO for an answer. In fact, you might stop asking at all.

My mother is oppositional in general and particularly resists going anywhere. What works with her is to keep her clean, dressed and tidy at all times during the day. Then I just go to her and announce it's time to go out. In her case, the main problem was the anticipation and preparation. So now we just skip that troublesome step.

Blessings and luck to you and your loved ones in resolving this challenge.
Helpful Answer (3)

Being a caregiver is a very rewarding job, but it is also a very stressful job if you do not have the help that is needed. My husband gives me so much joy because he has had such bad experiences in nursing homes. I would never allow him to be in one again. However, lately I am having major medical issues and I have gone from paying $15 an hour for 8 hours to now $18 per hour. The lady I now have has only been here a week and she is great. She not just helps me with my husband, but she works very hard. She showed me a reference letter and she had cared for a couple in their home and the son was very grateful. He speaks very highly of her and I do see why. If you can find the right person to come in, I think it would help tremendously. Good luck and take some time for yourself. I am now able to go back to our home in NC to check on it because my husband and I relocated to be closer to our daughters.

What I did not realize is that the children are young, 28 and 36. They both have children who are school aged. I now feel it was a lot to ask them to have to rearrange their lives to help us because the do have their own lives. One daughter is a single parent with two children (13 and 5 years old) The other daughter has three children (2, 6 and 8) Her husband is in the Navy and gone a lot. Our situation was stressing the girls and I would get angry. But once I stepped back, I understand because I was also the caregiver for my mother and they had to help me before they were adults.

Our new help, has helped me so I do not feel angry but understand they have their own family. The two daughters are his stepchildren. He has four older children and they do not even call to check on him. So again, I have to pay for the help, I need the help and I do not think about the money. We are renting a place that cost 3 times more than our home in NC and not as comfortable for either of us. We manage but we are going to go back home and I will seek assistance that I can pay to help me.

Be good to yourself and take care.
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$120 per day for respite care is a deal if you take 24 hour care at $120 that's $5 an hour for care take it and be thankful. You need some time for yourself. Also not sure how you thought you could be a full time caregiver if you are disabled. You might want to reconsider placing her.
Helpful Answer (2)

Contact your local caregiver group (must be a gazillion folk in Florida with similar issues)

You definitely need respite care.

You also should look into a new home for her.
They are not all bad.
Local carers association should be able to recommend some to you.

You sound a wonderful God Daughter.
But with a bad back and stress related illness, you and your husband are going to break yourselves (very common with carers)

Look at short/medium/long term options for her care and some respite for you.

You are NOT selfish, it is abundantly clear that you have gone to huge lengths to care for your Godmother.
Helpful Answer (2)

I used to feel guilt when I needed to get away. Then my own health began suffering due to the stress. I have COPD on top of anxiety & complications from surgery 4 years ago, also. It IS possible to still be a caregiver with disabilities, depending on what is required to do, if course. I felt dangerously close to having a stroke (still do sometimes) until I found this forum. It helped me understand the toll this takes on me & how very important it is to get away when possible. Do not feel guilty...this has got to be one of the highest stress jobs I know of. We must do whatever we can & whenever we can to take care of ourselves, too.
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