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My husband came home today after an emergency respite stay. Aged Care Service conducted an emergency ACAT and gave him 63 days respite with an extension of 11 more days to allow for NDIS to get their plan and funding in place BUT I must use it by 5.12.19 and only for the facility where he was. They said he was eligible for permanent placement!!


I was shocked. He said NDIS will probably recommend the same and fully fund it till DH is 65. He advised that next time DH falls I should not try to lift him but call ambulance!! as DH fell last week but I talked him through how to get up.


I said I was not ready to place DH in permanent care and I will apply for Adult Day care, respite and then eventual permanent. I can also get physio to come to house take him to heated pool for exercising each week


I was amazed at how high they placed DH.


Then MIL calls him I can hear her. Wants to know how many times I have visited. Then asks to talk to me. Says I should be doing more to help DH. See new doctors Try new meds. Why aren’t I trying harder. Then BIL rings today and says that as DH is my husband I should be taking care of him. Says family fears I am trying to get rid of him why is he good one day and bad another. Why aren’t meds working etc. politely excused myself from conversation.

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In Australia, Aged Care Services will conduct an assessment on a person and determine what level they are at in regards to their level of care I guess I didn’t realise how high my husbands level of assessment would be. Living with a person every day we get used to it. My husband has Frontal Lobe Dementia with Parkinson like symptoms. He is at the stage where he is on a soft diet because he doesn’t chew anymore and is starting to fall
Also I have to deal with extremely hostile in-laws who seem to think that somehow I am responsible for what has happened to DH. They also think I am trying to be rid of him Yes. I have the power and authority to say to the government I want my DH placed in permanent care

because I have this approval doesn’t mean I have to use it right away. However it does mean that when the time comes I will be ready

i will be honest and admit that I won’t be one who visits every day and sits for hours. The care home where he was is full of people of all ages and problems. They have activities all day My DH made a couple of friends which was new. He is 63 and I am 61. I need to have my own life away from being a carer This is round three for me. Also my DH has been a very needy person all our married life No room for me at all. So no, I won’t be selfless but I will still try my best
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Reply to PandabearAUS
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When Mom was in LTC a woman used to sit with her husband daily. He had had a stroke and coundn't talk and didn't seem to be able to interact at all, She was a talker and would bring him into the conversation. Like "don't u think so hon". She knew my Mom from Church. She would do the same with her. My Mom could no longer join in but I thought sitting with the woman was good for her and me. At dinner time she would leave because she didn't want to drive after dark. She joined in all the activities.

My DH has been hard of hearing all his life. Now he goes towards deafness. He thinks he will suffer from Dementia eventually. I have not promised him I will keep him home but have said I will try as long as I can. He outweighs me by 80lbs. I will do because he has been a very good husband and I owe him that.
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Understanding you were shocked at the immediate LTC placement recommendation, acknowledging lots of people are quick to push that as "the solution", and agreeing with everything Ahmijoy posted above, I still encourage you to carefully consider LTC placement, if not now then what conditions will signal it's time.

I encourage this because of my observation of one couple from my church. The wife (who didn't drive) had fragile health and was in her early 70s when her husband was diagnosed with stage 4 ALZ. Their children lived 4-6 driving hours away. She placed her husband in a local Christian run LTC facility, first in the locked AL (then didn't call it memory care then), and later he moved to the NH wing. The wife had someone picked her up and take her to the LTC facility almost every day (and made sure someone was there when she wasn't) where she spent the entire day with her husband making sure he got the care she wanted him to have before someone picked her up in the evening and drove her home. When he couldn't feed himself anymore, she fed him. She called the staff when he needed changing, she rubbed lotion into his dry skin, talked to him, watched TV and listened to music with him for almost 10 years, long after he didn't know who she was. She kept herself strong by walking the halls and sidewalks every day and lived long enough to make sure he had the best of care; she died about 18 months after he did. I do not think she would have made it very long if she had tried to physically care for him because of her own fragile health and then her husband would have been placed without her daily oversight and care.

What I learned from this couple was that there are many paths to care giving. Make the choices that work for you, that you can live with. LTC does not mean abandonment unless you choose to make it so; it can be the beginning of a exceptional kind of devotion. Without the strain and stress of direct physical care giving and with the chance of a solid night's sleep most of the time, you may be a better companion for your husband than you would be providing care in your home. Or you may be strong enough, physically and mentally, to provide exceptional in home care with appropriate supportive services. Choose the path that works best for you and don't let anyone guilt you into doing something you don't really want to do.
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GIAGIA Jun 13, 2019
Thank you for sharing this story. It was very moving.
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Good grief. Tell hubby’s family to back off. You must feel like you are being battered from all sides! My husband and I have been married for 45 years. We have spent more time with each other than with our families. We know each other better than anyone else does, including our families. He is disabled and bed bound. I know that people think he should be in a facility. But, that is a decision for us, and ONLY us to make, with the help of his doctors and NOT his family. I have not heard from his family for over 2 years. Nothing. Zip. Nada. Hubby is back in the hospital as I write this. His sister texted my son last night as we sat in the ER and said something to the effect that he should not hesitate to contact them if “he” needs to. Nothing was said about me. Auntie told my son “You are not alone.” When he read the text to me, I looked at him like he’d sprouted purple hair and horns.

you and your husband should make decisions based on what’s in your heart and what you both think is best for the two of you. There are emergency services if he falls. You will know when it’s time for a facility. Consider your decision carefully from all angles and with the input of his medical professionals. But, do take advantage of any covered services. We are trying to get a three day hospital stay so he can go back to rehab for a month and have it covered. We take advantage of home health care and anything else we can get that’s paid for. Rely on people whose “business” it is to help you and look out for you and your husband. When his family intervenes, explain to them ONCE that this is a personal decision between you and hubby and does not include them. They are not in charge of monitoring visits or anything else. Then drop it and when they press you, hang up or walk out.
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PandabearAUS Jun 13, 2019
Yes it’s seems that they fail to remember that this is about DH, not them. They have never accepted me even though we have been together for 46 years
MIL hates all three DIL’s as SHE is the number one female in hers sons’ lives
not once have they asked how I am doing. Not once
they are the most crazy bunch I have ever met full of false pride and vindictiveness
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