I am new to the boards , and would like some input on dealing with depression that caregivers expierence. My Mother & Dad still live at home. Mother has stage 5 AD and Daddy has limited mobility from a stroke 5 years ago, plus a host of other medical problems. I have 3 siblings 2 brothers and 1 sister. One brother lives away , and does not contribute to their care. One brother lives 1/4 mile from them and does all he can to help. Sister lives nearby, but has many " issues" that prevents her from caregiving as much as needed. I live 40 minutes away. I do medications, dr. visits, help with groceries, bills, financial, set up home health visits, some cooking, cleaning & other general needs. I have a niece that helps frequently as possible. I have been caretaking for parents since daddys stroke. 5 years ago. I am exhausted, irritable, depressed, dealing with health issues of my own, not to mention guilty that I don't do enough. Mother is very hard to deal with at times, and insists she needs no outside help. Please share advice on keeping myself happy / healthy. I know that an exhausted caregiver is not much good to anyone. I do love my parents deeply, and would do anything to help them. I have reached a point that I feel I NEED HELP!
You have already taken the first step to get help - admitting that you need it!
I was the live in caregiver for my Mom and it took me quite a few years before I began to demand help, and get it. Some of the old timers on this Board helped me - they kept telling me NOT to feel guilty that I was not superwoman and could not cope with everything.
Mainly I got help from my brother who lived about 25 minutes away. But I also dropped my pride and asked friends of Mom's to come and pick her up for church once in awhile, so I could have 2 hours of peace. Eventually we also asked my sister who lived far away and didn't agree with the diagnosis to help, at least financially, if she couldn't do any practical work. That's when we hired a home health aide to stay with Mom for most of the time I was at work. This did not relieve me of any work, or give me any extra sleep, but it did give me some peace of mind while I was at work, especially since Mom had been getting lost.
Finally I was at the point where I frankly admitted I could not go on living with Mom any longer, and it was time to hand over the responsibility to someone else. My brother and SIL then took her into their home, which lasted only 3 months because she fell, wound up in a wheelchair, and in a NH (where she, and everyone else, is much happier!)
In your case you have a certain amount of help from family members, but obviously not enough. How would it be if everyone chipped in and hired an 'aide' to stay with your Mom for several hours a day? What about eventually transferring her to a nursing home? Is your Dad able to help in the house or is he just another patient? How about both of them going to assisted living?
Call a family conference, tell them you are burnt out and in danger of getting sick, and open the discussion.
I was sick by the time I left. High blood pressure, (now normal, without meds), insomnia, depressive thoughts, heartburn, irritability, a feeling of hopelessness.
Tell the others! Don't be a martyr. The sad part is that now that I have been away from Mom for 2 years, she has totally forgotten that I ever lived with her.
Martha, Thanks for the reply. I actually do have home health rn's coming twice weekly. Had an aide for my Daddy's bath , but he decided he didn't need that anymore. My brother mentioned them coming to live with me, which we had previously talked about doing if it came to that. I quickly decided I couldn't handle it . I have discussed my need for more help, but it seems to build walls between myself and another sibling. I don't know what the future holds for me or my parents. I want their last years to be happy ones , not total chaos & confusion that our family now has.
I can relate to your situation. I too had both parents in poor condition at the same time and trying to live at home. I have a sister who has taken on the role it sounds like you have. We have a brother too far away to help. My sister changed her whole life to try to cater to our parents needs. We couldn't find a retirement home where they lived so had to move them about 100 miles away, my sister sold her house and moved too. She still worked so commuted Monday and Friday for work. I recently retired and live about 4 hours away and would go every week for a day or two while my sister worked. Neither of our parents could manage their lives without a lot of help and it was burning both my sister and myself out. We started applying for NH placements but it is a slow process as we needed government funded placement. My Dad passed away during this time and a month later my Mom was moved to a NH. It has improved since the move to the NH though there is still much to do for our Mom as well as dealing with the logistics of my Dad's death. My sister and I were both very depressed throughout the last 10 months as things just got worse and worse. I feel much more optimistic than before and at times my sister does too though she is still suffering from depression that is largely related to the stress of caring for our Mom.
Some things that may help:
1) Support from each other - as Martha has said tell the others in the family how you are feeling and ask for help. Delegate some of the work to them.
2) Respite care for you - have a sibling come for a weekend (or a week) every now and then, if possible, so you can do the things you need to do for yourself.
3) Start looking for a NH for both of them. It sounds like it is time for them to go to that type of care.
4) Do not take them into your home or move in with them no matter how strongly you think this is the right thing to do.
5) Try not to feel guilty that you aren't doing enough. If you are like my sister and myself, you will never be able to do enough to satisfy yourself, you must let some of it go.
It may be a long journey with lots of sadness along the way but it will not always be like this. There are lots of us here living the same nightmare so share your feelings and thoughts - we understand.
I knew there had to be some people somewhere that has been there done that. It is very frustrating to try to talk to someone who doesn't have a clue how you feel. Thanks for listening! The ONLY reason my parents are even still living at home now is because they still depend on each other. They have been married 64 years , and are extremely close for which I am so thankful. Daddy is Mothers memory, and Mother is Daddys mobility. I know it may sound ,like a strange situation. It is slowly becoming more & more difficult for them to function for each other. My Mother still insist she bath Daddy, although most times she either forgets ,or they just dont bother. It is just soo sad , and I know whichever one goes down first, the other will be devastated, and maybe will not exist very long after. I always said I would never put either parent in a NH facility, but never say never. I just don't know if I could ever live with the guilt if it comes to that. I guess you are right no matter what I do it will never be "enough" in my way of thinking. I don't know if it is normal for AD , but there are days when Mother can seem almost normal, and I question whether she really has it. Maybe it's just me wanting so badly to have back the Mother I once knew. I have cried so many tears , and sometimes feel like I can't function anymore. I recently went on vacation for 17 days hoping it would give me a much needed reprieve. When I returned the finances were in such a mess I wanted to scream. Sometimes I feel like the other siblings think It is my job to keep it all together. Anyway thats a whole different discussion. Thanks again for allowing me to vent!
I'll just say I've been there and done that with my dad, my grandma, my grandpa, an aunt and a still undiagnosed uncle.
Can you get your parents into an assisted living facility? They might be willing to go there if they could go together.
If not, talk with your siblings and their spouses, any adult in the family. Negotiate what will be done, when and by whom. For instance, your sister will take care of the shopping and cooking. Someone else will take care of the cleaning and laundry. Someone else will take care of doctor visits and finances. Everyone who can MUST pitch in. Every little bit helps. This way everyone knows what their particular responsibility is and no one is stepping on people's toes.
The only ones who should feel guilty are those who CAN help but are just sitting back and watching. You shouldn't feel one bit guilty! But I still understand your feelings. Let go of the guilt. Know that you're doing the best you can and accept that. Caring for elderly disabled people is much harder than raising a child. And we all who have children know how hard that is!
The number 1 thing you MUST DO is take care of yourself! This is not a selfish thing. It's a necessity! As you're seeing now, you cannot go on caring for others first and neglecting your own health. If you become too sick to care for your parents, who will do all that you've done for them? You must take care of yourself first. Then you can help others. I'm not saying don't do anything for your parents. What I'm saying is get the family together ASAP and talk to each other. You should let them know how burnt out you are and that you need for them to help you. Discuss options (home healthcare, assisted living, etc.). There will probably be disagreements so go into it knowing that everyone is entitled to their own opinion. Remain calm. But make your stand on this one thing-you need (and must have) more help.
If no one is willing to step up to the plate, you'll of course have to find other options. Could your parents friends or trusted neighbors bring dinner for your parents once in a while? Or take your mother shopping? Maybe light housekeeping? Just a couple of ideas.
You are all so very kind and understanding. I am just feeling so lousy lately . I had a CT scan today, and found out I have a large stone in my right kidney . As they say when it rains it pours. Thanks to all for listening ! Keep my family in your prayers.....Vicki
I wish you a speedy recovery from the kidney problem. Are you on medicines to dissolve the stone, or are they going to do it with ultrasound? I hope it all goes well and you'll be feeling better again. Meanwhile you have every reason to reduce your responsibilities with your parents and let others step up to the plate!
Thanks Martha & Barb,
I will find out on Monday what the course of treatment to be used for the stone. Hopefully meds or some type of outpatient tratment. I have been battling it for about 6 months thinking it was my colon . I am hoping that when I feel better , the stress won't be as hard to deal with .
Then dr started my Mother on RISPERDAL. I don't really know what to expect from this drug . Anyone have any expierence in adding this with Aricept? She has been a little agitated lately, so I am assuming it is to try to calm her. Home Health RN called dr after I mentioned Mother's agitation to her, and this is what they added. Hopefully it will help. She does have areally hard time sleeping at times.