Don't Know Where to Turn. Mom fighting Assisted Care.
Background: Mom is 88 and has lived next door to me in a duplex for 6 years ever since I retired. I am 70 and in fairly good health. Mom has heart valve disease. About 3 weeks ago, she started to black out and fell, three times in two weeks. The third time, she broke her pelvis. 1 week in the hospital, now a week and half in the LTC taking rehab. Mom has mild dementia, but is physically strong and doing well with PT. Our homes, are a split entry with 8 steep, narrow steps going up to LR, Kitchen, 1/2 bath, and then 8 steps down to bedrooms. Steps to get into the home and out. We live on a hill.
I do not have any siblings, so no one to help. Husband is home, but is facing aneurysm surgery in a couple of months. I have cared for Mom through a colestomy, stroke, 2 surgeries, and have taken her everywhere with us in the past.
Problem:
Mom refuses to go to a nice Assisted Living to complete her recovery. Her Doctor, her PT Director all say that is the best place for her. They believe the falls were caused by heart irregular beats or even a brief stoppage. It could occur at any time and any place.
I want Mom in a safe enviroment, without steps and medical staff at a moments notice. She wants to come home. We have had three terrible discussions about it. Tears, threats, more threats, blame etc. I have been patient, have discussed the reasons. Have taken the blame by saying I am getting too old to continue her care as she gets more frail.
She say, "If I could die at any time and any place, I deserve to die at home and so I am going home and let what happens happen". Is she right?
I have prayed, and talked to the professionals. Now I seek your consultation.
Please help, especially if you have faced this kind of situation before.
Sorry this is so long.
Louise
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Hi Sivad--
We went through a similar situation with my father after he had a stroke; even though he was paralyzed completely on one side, he insisted that he return home. My mother had no way of taking care of him; he was incontinent and unable to move himself from bed to wheelchair, or even to sit up without assistance (he is a large man, so there was no way she could move him or help him if he had fallen.) Finally she made the decision, obtained POA, researched and found a quality assisted living facility, and had him transferred directly after being discharged from rehab. I know there were innumerable fights with my father, but ultimately she just had to do the right thing with regard to his care. As a family, we had to all support her, even when my dad became upset. The transition was made easier in that she is with him for hours everyday, even if its just to watch their favorite TV shows together. She bought a wheelchair van, and takes him home as often as he is able.
I know that this was one of the hardest things my mom has ever had to do, but it was important that my father receive the care he needed, even if he did not understand what was necessary.
It wasn't an option for us, and I imagine you've already looked into this, but have you considered home health care? It isn't necessarily a permanent solution, but could maybe function as a compromise in the interim.
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Thanks for the reply and encouragement. Now things have sure changed all at once, I am ill and it looks serious, waiting for test to come back. I may be unable to be her care giver in the future. I am so scared, I don't think I will go to bed tonight. Mom is doing very well. We are still at an impasse. Thanks you. Louise
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Louise, I am sorry to hear you are not doing well. We've been through a similar situation with my husband's grandmother and in the end you need to do what is best for you! You can only do so much and with the fear of your mother falling and seriously injuring herself again then I think Assisted living facility is a reasonable option. The assisted living facility they were at was great; lots of activities, private little apartment, good meals, bus services, etc. It is all overwhelming for the caregiver and the parent but sometimes it is the best decision and with you now being sick just remember you cannot do it all! Best wishes to you and your family.
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Louise, I took care of my Mother for years, she has many health challenges, plus a few surgeries in there. She lived with my hubby and me, plus I had a daughter that was 11 at the time.
My sisters got in my face and said, 'how long do you think you can keep doing this!' It was really affecting my health.
I had the doctor tell her I couldn't do it anymore and when she was able enough we were moving her to her own place. She WAS NOT HAPPY with the news, believe me.
She likes having her own place now and is great full when I come and do things for her now, where she used to expect it. There is no way of doing this without the fight, but it does get better after the move.
In order to get my mother a place I had to say she had no place else to go, and she didn't either.
I know what your going through, the stress of it all can affect your health.
Have you found out what is wrong with you from your tests?
Hugs to you, Diana
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Update: How can I thank you all for your support and help? Mom has now agreed to move to the Assisted Living Center, next to the NH. She can continue her PT with the same team next door. She only agreed to go for two months and insisted I get her rental furniture and not move a thing of hers from the house. Fine. Whatever it takes to get her there.
My husband is so relieved, I guess I did not fully realize how much he did not like the current living arrangements. I think we will likely move also.
Still no diagnosis on my head, ear pain. I have another appointment on Monday.
Thanks again. I will likely post again if I need you help and advice. Louise.
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Louise, I'm sure this feels like a mile stone. Thank goodness she is going to get some assisted care!
Maybe she won't be so apposed to living there once she see's what it's like.
I'm sure with all the stress your immune system is suffering. Even if your doctor says you need an antibiotic, immune system boosting stuff just help the antibiotic work better in the system.
Keep us posted how it's going. Take care of yourself and your hubby.
Diana
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Thanks everyone. Still no diagnosis on me. The discussion has moved to the 5th cranial nerve as the likely source of the problem.
We got Mom moved into AL on Friday. Yesterday, she slept most of the day, and was in a foul mood. Threatened to start walking to her home, threatened to take her own life, generally seems to be looking for some kind of stick to hold over me. She takes anti-depressant now, so maybe she needs an increase. I am not going to do anything for now, but wait, see how she settles in, pray, and wait so more.
The professionals, Doctor, P.T.,. have been very helpful in getting her into AL. I am thankful for their help. Oh, just in case someone has the same or similar problem, I took my digital camera and took photos of the stairs in our home and carried it to the PT assessment so they could SEE, what going home would entail. Very helpful.
Louise.
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Smart move with the camera Louise!
I think your Mom is just finding things to be mad about at this time. It sounds like she gotten her way by doing this behavior in the past. This time it's not working so she will make bigger threats till she settles in and connects with at least one person there at the facility.
I'm sure the nursing staff is aware that she is not happy and will watch closely.
I'm not too sure what the 5th cranial nerve entails, sure hope you have a good doctor and can get some help for it. Huggs, Diana
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Thanks to you all, I guess I was too optimistic. Mom is telling everyone she must go home and PT is now going to release her to do so, only 8 days after telling me and her that she could not do "Mt Everest" stairs. Needless to say, I am the person catching the devil and today was especially bad. So call me evil, I guess I will just let her come home and then pray for some peace. If she falls, then I guess she falls. I can't take it anymore, and I refuse to just stay away from her. I will clean her house and make it where she can at least walk through safely, but I am now going to risk my health and limb by trying to push/pull her up the 16 narrow stairs in her home or mine. (We have a duplex with identical sides). Thanks for listening. I feel kind of trapped, but the fight is gone out of me. She said" I am 88 and should be able to live the way I want until I die". Ok, you sold me. Thanks for listening. Louise.
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Is there any hospice or someone that can come in and relieve you so you can at least have a life?
Is there a county nursing service in your area, you could talk to them, they will steer you in a direction for some relief.
It's so not fair when your not well and have to do it all.
Don't give up on you, live your life and do some things you enjoy. You can't be there for anyone else if your not there for yourself.
Check with the place your mom was and see if someone can relieve you at least one or two days a week.
So sorry your going through this, I do know exactly how you feel. Huggs, Diana
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Thanks Diana for your reply. You know I stayed home today, didn't even go to see her.
Yes, you are right, I must look for someone to fall back on. Opps! Bad choice of words.
I am so mad at PT for the whole thing. Why did I go to all the trouble to rent furniture, move her from the nursing home, and everything else. They made it sound like she could never again do the stairs. I am so uncertain now. Anyway, we have been looking for a place in MN to move back up there, and I was also looking for a nice AL for Mom, now I am kind of in fix. Oh well, God will show me the way. Appreciate everyone, Louise
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
What a lot of work and now this. I hear your frustration. I remember feeling the same way.
I'm thinking the only way they did release her back home is that she had you there to care for her. That's pretty much what they go by. If she didn't have someone to care for her they would never of sent her home.
I'd be knocking on the door of the county nursing service and talking to them. Don't go in there in an angry mood, you know from trying to deal with your mother that this is not helpful. Just let them know your situation and tell them how exhausted you are, show them the pictures you took of the stairs. Tell them your sick too. If they cannot help you, ask who can.
Like I said before, the only way my Mom got into assisted care was because she had no where else to go, she was living with me and my family. She thought it was a permanent arrangement. After three and a half years of it I was so exhausted and it was very hard on my marriage. I had no life anymore at all. Very sad situation.
I feel for you, Come here and vent if you need to, I can take it. Huggs,Diana
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Oh Diana, You are an angel. I have decided to bring her home at the end of the month and let things kind of move on from there. My husband will install second side hand rails on the stairs, so she has them on each side to grasp going up and down.
My husband was witness to her outburst at me on Wed. evening before we had come to take her to dinner. It was the first time he had seen that from her toward me. He has definitely changed his attitude toward her. He wishes she was not coming back here to live next to us, not about her, but about me.
Anyway, we are moving on from here. My nerve illness is in remission just now, but the Dr. says that it will come back again and again. It will have to get in line for attention.
Love and thank you, Louise.
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Louise,
Your a saint you know. Your making some big big brownie points up there. I think what makes it all so very hard to take is that the person your sacrificing your time, health and energy for, doesn't care to try to be nice or grateful.
In my mothers case, she didn't even realize she was so darn grumpy all the time. Diabetes is some of the culprit and she was in a lot of pain all the time. It's really hard to be nice when you feel so awful all the time.
Plus, when Mom was living here, the other kids didn't come around much. I pretty much was stuck with all the care and shopping, doctor visits and cleaning. Now at least with her in her own place, my sister if finally doing all that, I can pretty much just show up and visit, or volunteer to do something "If" I want to. Which I usually do. The difference is....now she IS grateful when I do anything.
Plus it's great to have my own house back. When she moved in I got rid of my furniture so she could keep hers, when we moved her out, this place was pretty much empty....good time to get some new stuff.
I remember it well the stress of doing everything, and ending up with nothing left energy wise for you or your husband. It's hard. One day at a time. Enjoy the rest of your month. Blow off some steam here, I can sympathize for sure.
Huggs, and great big blessing, Diana
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Hi, Time to check in here. I have been down with a sinus infection that refused to go away and I am on meds. First time in years for antiboitics.
Mom is all happy now, she is coming home and we will all pick up right where we left off. No, she says, she will not need to make any changes, she is just fine and do whatever she wants. Tomorrow I will drive her back to her beauty shop for the first time. We will see if all goes well. I have not even started on cleaning up her house and such yet. Had to change the phone, cancel the furniture rental etc. etc. and rest for my illness.
Anyway, on it goes. I feel very discouraged, and I feel like I should be super happy. I guess I just did not realize what it would be like if she were not immediately in my face and life. Now I do. Too bad, I don't like the way I feel. It makes me ashamed.
But, Life goes on. Love and thank you. Louise
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Louise, I know what your talking about when you say you feel ashamed, (I remember feeling that way too) that 's normal, life has forced you to take care of yourself for a change, when you feel obligated to be doing for others, just because your related.
Your feelings are important too, and for so long your Mom hasn't really given two cents what they were. Here you are sick and your still doing it all. (Is there any way to get a cleaning lady to come in for you?) You need to take care of yourself.
Who's going to take care of your Mother and your Husband if your not here because you didn't take care of you? Hmmmm?
So sorry to hear about your new troubles, sinus infections are not fun, been there too, seems our lives are similar in more ways than one, good thing they have you on antibiotics, it no fun to take that kind of medication but it is necessary.
Years ago I worked at a place that turned on the blowers in the store before they cleaned the filters, junk came poring out of the filters and ever since then I've been prone to sinus problems, I'm taking a silkworm enzyme for it now and it's really helping me from getting sinus problems which I usually have this time of year. Hope you feel better soon.
Sure your Mom is happy, she is getting what she wants, whether it makes it hard for others or not. I hope you look into someone coming in a couple times a week or even a couple times a month to give you a reprieve from care taking. You really need to feel like you have Some Time for yourself. Does she have any funds to hire a person to come in, do some light cleaning or what ever needs to be done? You can ask at the county nursing service if that is available, they would also know about this at the place she was at for Physical Therapy.
Now that you've had a taste (in your mind at least) of what it would be like to just go visit your Mom and have someone else take care of her, you feel guilty or ashamed for thinking those thoughts, maybe it all happened for a reason.
Your feelings are valid, of course your going to feel ashamed, guilty, etc.... your a good person, if you weren't you wouldn't have any of those feelings. Right?
I hope you can figure a way to find some time to yourself, because life may force you to do if you don't.
I only say this with the best intentions.
Please take care, Diana
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Louise,
I have been following you on this thread. You are facing an up hill battle here-as if you don't already know that.. with your Mom having dementia, it is only going to get worse and worse and that hill is going to slide down very quick. You have seen what is coming and the picture isn't pretty.
One thing that I want you to do before your Mom gets any worse. You need to make sure that you have a POA, both kinds durable and medical. And you also need to make sure that you are on the bank accounts so that when she gets to the point that she is no long lucid enough to handle her affairs, that has already been taken care of. But the major concerns are the POAs. The HIPPA acts are strict. Some doctors are better than others, but you need those POAs to make sure that you can get the information that you need and so that you can deal with the meidical issues that come up.
I lost my Mom to Alzheimers a year ago next week. I lost my Daddy to an abdominal Aortic Anuerism a year ago three weeks past. So I know how nasty this can be. You are shoveling sand against the tide, as Mom used to say, and you have my utmost sympathy.. But being a 24/7 caretaaker isn't right for your health or your marriage either...You need to find someone to come and help out at your Mom's three or four times a week...you can't do it...
you are in my prayers..come and visit us on the Alzheimers board..you can get some good advice there also. We have all been through it....
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Diana, I bake and pray (love that). I thought I would catch up, since we are home today for a break and rest. Sinus is all better, nerve disease still in remission, so I am good. This is moving home week for my Mom. Husband has the new handrails installed, and new plastic ones on the deck stairs. PT has cut her to once per week so her last PT is Wednesday. She did fine, just a couple of wobbles, at the beauty shop appt. this week and also is walking everywhere without the walker and doing well. I just wish her attitude and mind were as well. The nurse in AL told me every medical incident that happens from now on, will take big parts of her thought process away, in addition to the normal progression. I guess, the way she puts it, Mom will not go back to not being Like she was, but will stay angry and the changes are permanent.
Your stories and advice are holding me up. Giving me courage, to make changes.
I do have POA's durable and medical that Mom established in 1994 when my Dad passed.
However, she is not to the point of being unable to handle her own affairs, for the most part. How can I ever thank you all?? This site and you all are truly a blessing. Louise
Re: Don't Know Where to Turn. Mom fighting Assisted Care.
Your so welcome Louise, sorry you have to deal with this and watch things get worse, I hope your week is for the most part smooth sailing. Huggs, Diana
