Husband with dementia

[Seabird15]

Good evening.
My first post here looking for advice please.
My husband is 75 and is in the late stages of dementia I have cared for him at home since diagnosis in 2019. The last year he has got worse and I had to pay for carers to come in and help due to him fighting me and him no longer allowing me to care for him. He can no longer walk unaided, he can't speak, I feed him, he is double incontinent and definitely doesn't recognise me. He sleeps all day slouched in a chair but very restless at night. He has started getting aggressive with carers for personal care and started swearing which just isn't like him. I feel his quality of life is minimal and I can't leave him to go out. I am so lonely, but also feel like I owe to my husband to care for him as I am still able.
My son and his wife are due a baby in the new year my first grandchild. Him and his sister visit frequently but have both said they feel their dad would he better off in a care home so I can live my life and enjoy my first grandchild, but the thought of a care home and not having control makes me anxious, even though I feel trapped at home. Dilemma. Whilst I don't want to miss out on my grandbaby, I also took vows and devoted to my husband I feel like care home is me giving up on him.

 

[Kevinl]

You're never alone on here, but a big reply will take longer so for now just thank you for posting, you're never alone on here. K

 

[scotlass]

A care home is not giving up on your husband, just the opposite, when the time comes that he needs more care than you can give, then you are doing the best for him. you can still see him as often as you want, and your new grandchild too. you have looked after him for a long time, you also need some time for yourself...

 

[northumbrian_k]

Hi @Seabird15 and welcome to the Forum. There comes a tipping point when what the person with dementia needs becomes more important than what they and their partner want. Recognising that point is not giving up on the person, any kind of betrayal, or reason for guilt. It is facing cold, hard facts and having the courage to do whatever is best for the person that you love. I faced this hardest decision 5 years ago, realising then that the level of care that my wife needed and deserved was more than I could provide. Moving to a care home improved her care and her quality of life. She is settled and content.

Admission to a care home is not the solution for everyone, but can be in the best interests of all concerned. You owe it to your husband, yourself and your family (current and expected) to at least give it serious consideration.

Care homes: When is the right time and who decides?

Advice and practical tips for carers on when is the right time for a person to be moved to a care home.

www.alzheimers.org.uk

 

[leny connery]

Good evening.
My first post here looking for advice please.
My husband is 75 and is in the late stages of dementia I have cared for him at home since diagnosis in 2019. The last year he has got worse and I had to pay for carers to come in and help due to him fighting me and him no longer allowing me to care for him. He can no longer walk unaided, he can't speak, I feed him, he is double incontinent and definitely doesn't recognise me. He sleeps all day slouched in a chair but very restless at night. He has started getting aggressive with carers for personal care and started swearing which just isn't like him. I feel his quality of life is minimal and I can't leave him to go out. I am so lonely, but also feel like I owe to my husband to care for him as I am still able.
My son and his wife are due a baby in the new year my first grandchild. Him and his sister visit frequently but have both said they feel their dad would he better off in a care home so I can live my life and enjoy my first grandchild, but the thought of a care home and not having control makes me anxious, even though I feel trapped at home. Dilemma. Whilst I don't want to miss out on my grandbaby, I also took vows and devoted to my husband I feel like care home is me giving up on him.

so sorry to hear of the downward turn of your husband's development of this disease. Some people will see sending a loved one to a care home as giving up, and not keeping a promise to have and to hold etc. In my opinion, some people are strong and can , however hard, deal with the every moment of every day demand of being a carer. Others really are not, and burn out with the effort, crushed by the sadness of it all and the loneliness. We are all different. You really must be honest to yourself , which one are you? I worked in a care home , and some of our residents came to our care home after their carers burnt out, in some cases died before the ones they cared for did. Listen to your body and your emotions, do admit it if you feel cannot go on. In my opinion, try put him in respite and you have a rest, and see how it pans out. Never feel guilty about the eventual decision. if it comes to it, although you might feel sad, guilty, ashamed even, two do not need to fall victim to this disease. one is more than enough, my two cents worth. It is not a universal opinion. Sending you hugs and wishes you stay focused on what is important to you

 

[canary]

Hello @Seabird15
A care home is not abandonment, even though this is the general perception of the general public. It is a sharing of the care once their needs are too great for them to be met at home. My mum moved into a care home as she needed a whole team of people, working round the clock, and she thrived there. My OH is still at home, but I am aware that the time will almost certainly come when his needs are too great for me to deal with at home. The marriage vows do not specify where you both have to live

 

[Spottydog]

Hello, it sounds like you have done a wonderful job so far caring for your husband through his dementia journey so far and you have the support of your children in deciding the next steps. One thing that struck me is that you said his quality of life is minimal and consequently yours is too. You want to retain control which is totally understandable, but sadly your situation will not get better, so I think it is a good idea to research your options whilst you can. Finding a good home for your husband to continue his journey is not giving up on your vows. What would your husband say if he were able to? Talk it through with your children and remember they are worried about YOU as well as their dad... They want the best for you both.

 

[My Mum's Daughter]

Good evening.
My first post here looking for advice please.
My husband is 75 and is in the late stages of dementia I have cared for him at home since diagnosis in 2019. The last year he has got worse and I had to pay for carers to come in and help due to him fighting me and him no longer allowing me to care for him. He can no longer walk unaided, he can't speak, I feed him, he is double incontinent and definitely doesn't recognise me. He sleeps all day slouched in a chair but very restless at night. He has started getting aggressive with carers for personal care and started swearing which just isn't like him. I feel his quality of life is minimal and I can't leave him to go out. I am so lonely, but also feel like I owe to my husband to care for him as I am still able.
My son and his wife are due a baby in the new year my first grandchild. Him and his sister visit frequently but have both said they feel their dad would he better off in a care home so I can live my life and enjoy my first grandchild, but the thought of a care home and not having control makes me anxious, even though I feel trapped at home. Dilemma. Whilst I don't want to miss out on my grandbaby, I also took vows and devoted to my husband I feel like care home is me giving up on him.

Reading through your post make me think that your husband may need a nursing home not a residential placement.

You'd NOT in any way "giving up on him", you'd be making sure that he has 24 hour care from carers who have had a good night's rest, days off and holidays. If the roles were reversed, would you want your husband to be your 24 hour carer? Probably not.

Care and Nursing homes both welcome children; the residents love their visits and the carers spoil them with biscuits and ice cream. I've even seen one home with a special, family visiting room so that the children have access to a secure garden.

Suggest that you ask your children to visit, leave one of them with their Dad and take the other one to view a few homes. Remember, having a look around is not committing yourself to anything.