I am looking for caregivers who have experienced their love ones with CBD!
CBD: I am looking for caregivers who have... - PSP Association
CBD
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cjp1058
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There was my post in George, Kevin answered about it xxxx
Hi. My husband has CBD and I am his main carer. I am not sure that I will be able to help much but fire away and I will see if I can. Are you in the UK?
Love Ali B x
No I live in the United States, North Carolina, my sister has CBD and I help her husband take care of her. The main problem we are having right now is finding some help for her!
Just type "in home care north carolina" into whatever search feature you use and check out the list that pops up. There are a lot of companies that offer in home care services BUT do you due diligence as not all companies are run the same way.
Another source is to ask friends and family if they've ever used in home care services. The lady we had come in towards the end of dad's being here when I needed help or to get out was a friend of a friend who happened to be a CNA. She worked out very well for us.
If your sister or her husband were ever in the military they MAY qualify for some type of VA benefit.
Also check your area for an Agency on Aging, it may be called something similar, to see what resources they might offer.
Good Luck
Ron
Thank You for the information very helpful
Dad has CBD and I was his main carer for about 3 years, Now he is in a nursing home but I still am still very active in his care plan.
Ron
I, too, would like to help you in any way I can. So that you have a picture of our current situation - my husband has CBD and has just recently lost his ability to walk, is on thickened liquids, has no use of his left hand/arm, and is losing coordination on the right side now.
There are several wonderful people on this site who care for loved ones with CBD. I think you’ll find lots of support. As AlliBee said, “fire away!”
I'm jumping on too. I'm a northerner, Bucks County, Pa.
My husband has CBD, is in nursing home for past 7 months. Although he is being cared for, I am with him 6 or 7 hours per day and contribute to his care. (Our aunt has a 24 hour caregiver living in her home for about 6 years..not CBD but 96 years old with dementia. This is through local agency.)
Here to help or just support. You are not alone.
Hugs,
Liz
Hello Cjp and Welcome!
I live in Vancouver BC and look after my husband who has CBD since approx 2013. I'm happy to discuss anything about cbd you wish. Are you willing to share any details about how your sister is doing and when her symptoms started?
This is a very tough road, but you can make it through. We will support you!
Anne G.
Hey, my sister wasnt diagnosed until about a month ago but she has been having problems with her mine for the last year and 1/2. She has problems with dressing herself,she can't do that any more, cant cook, cant drive, cant take her own medicine, cant be left alone, cant use a cell phone, or bath herself. For the last 3 weeks she started having angry issues. Her husband doesn't really know how to deal with what is going on with her. He gets burned out dealing with her and calls me and wants me to take her for 2 to 3 days. It really isnt fair to her to have to do this. It is heart breaking to see her go thru this disease. I try to do what I can for them but my time is limited. The angry is the worst because she leaves from where she is at ro just get away and it makes things worst. Any suggestions u could give me would be greatly appreciated. Thank You!
Dear Cjp; That is a heartbreaking story. She sounds like she is rapidly advancing through the disease. I'm so sorry. Not everyone who has CBD gets the front-temporal lobe issues (anger, impulsiveness, inappropriate emotional responses etc.) In fact, sometimes people who have a lot of that actually have a different disease like FTD-variant PSP or Lewy Body Dementia. I am only quoting what others who know more than I do, have said many times.
Was your sister diagnosed by a Neurologist? Does she have any of the typical movement problems of CBD like stiffness, lack of coordination, rigidity or "alien limb" on one side of the body? Any loss of speech or communication skill like writing?
Does your husband have an HMO or other health plan with a consultant who can advise on what care benefits she qualifies for? I'm sorry I don't know the health system in your state the way I know my own province. There never seems to be enough, but they may know of not-for-profit or volunteer organizations that can provide help.
I hope you'll keep posting - at the very least, it helps to know you aren't alone and people who understand the disease care about you and your situation.
Take a deep breath! Think about how you will look after yourself as you deal with the stress of this. You are obviously very close to your sister.
Courage, patience and faith!
Hugs XXX
Anne G.
CJP,
I’m in Texas and my wife was diagnosed with CBD last year after 5 years of being misdiagnosed with early onset Alzheimer’s. Your description of your sisters symptoms is very similar to my wife’s. The additional symptom that complicates those is that she has effectively lost her ability to communicate. Just about every day my wife with go to that “dark place” where she is angry or sobbing uncontrollably. Yesterday she was shuffling aroun the house walking into the walls crying uncontrollably. When I tried to get her to sit down and tell me what is wrong, she became angry. It is the most helpless feeling.
We used a home care service last year while I was at work. My wife liked it at first, but became dissatisfied after about 3 months. I retired early at the end of last year to care for my wife. She has gotten to the point that she wants me close all the time. She has good friends that she has coffee with occasionally so that I can run errands, but most of the time I try to take her with me. I have tried to have outings a few times each week so that we get out, but that is becoming more and more difficult
I feel for your brother in law. It is heartbreaking at this stage of the disease. It is a thankless job caring for a CBD loved one, especially when you are unable to console or calm them. I have found that this forum of friends to be my relief valve. They understand what I’m going through better than family or lose friends.
I wish you and your brother in law peace in this difficult time.
Bobby
Thank you so much, I am sorry for you to have to deal with this disease, it is so heart wrenching. My sister thinks someone has kidnapped her or holding her hostage, so she will bang on the door to get out and take off walking. Very very angry can't reason with her during this time. Has your wife had problems with one of her eyes drupping. My sisters is I think it is affecting her eye site too. She will walk around like she can't see something she is looking for like her dog, and he will be right there. Thank you for your help on this site it really helps.
Dear Cjp:
Has your sister's Neurologist prescribed any drugs such as SSRI (anti-depressant) or anti-psychotics or other psychiatric drugs? If not, would it be possible to find a Neuropsychiatrist in your state? I didn't even know Neuropsychiatrists existed until I read it on this site. Some mental symptoms just can't be "calmed" by soothing music and "there, there sweetie". I don't think you need a Neuropsychiatrist to prescribe such drugs, but they would know more about those drugs and the benefits.
There is no way your darling sister should have to struggle in fright, confusion and misery without better chemical help! AND - a calmer patient is going to mean more care staff who would be willing to look after her!
I'm following you - I would really like to know how you get on.
Courage....XXX
Anne G.
Her vision is definitely affected. She will be looking for something on her meal place setting and will be in front of her, but unable to see it. Sometimes it is that she won’t look around. I don’t think it is that her eyes are drooping, rather that the signals in her brain are not being processed correctly.
Lately she is looking for a baby and upset she can’t find it, or saying she wants to “go home”. I can’t get her to articulate what that means. No reassurance works. After some time she calms, sometimes apologizing for being so upset.
I have read about experimental studies for aggression, but can’t seem to find them now.
I hope this helps,
Bobby
I am carer for my wife who was diagnosed with CBD in March 2013. She is now still cared for at home, her express wish. She is permanently in bed. Unable to speak or eat. She is fed by tube and is catheterised.
As we are in the U.K. We can only share our own NHS experience of the disease.
As I have over 5 years caring experience I would advise on the importance of respite breaks for carers.
Kenh, did your wife ever display dementia symptoms such as members Bobby and Cjp are describing? My hubby (cbd, symptoms since 2013) has increasing cognitive loss but not the same sort of "dementia"??
Anne G.
Yes. She would lose her bearings even in familiar situations. She would get disoriented just walking home from the hairdresser or from friends houses only a few blocks away. She got lost in the centre of her home town and turned in front of a scooter rider. Injuring him and writing off the car and the scooter. I would suggest that the dementia was linked mainly to spatial awareness and not comparable to Alzheimer's. Soon after her diagnosis she got a bladder infection & spent six weeks in hospital. She was unable to walk when she came out, her leg having twisted out of joint. The involuntary movements of her left arm having spread to her leg.
So darn sad..😞 My hubby wants to stay at home too. If your wife was dx in 2013, she probably had symptoms some time earlier?
Do you have a bed that turns her automatically, or do you have to do it? I ask because I try to envision what I'm in for down the road...
Thanks,
Anne G.
We have a hospital bed with mobility mattress to prevent bed sores. She has had this bed over 5 years now and with good care workers and regular applications of Proshield which we receive on prescription there have been no problems. She also had a special wheelchair moulded to her body. We have had to return that as she is no longer well enough to go out. We get superb help from the local hospice. Who provide sitters to allow me to get out. They are also involved with our local NHS palliative care team in choice of treatment and medication. As I read through the various posts, I have faced most people's worries and have found help when it was needed.
Can you please explain what a mobility mattress is .
It is an air filled mattress which has a pump attached which gently moves the mattress under the patient and therefore preventing pressure sores. There is a name for it but I can't remember. They use them in hospitals for people who are unable to get out of bed.
In our case it came with the hospital bed provided by the NHS. Hope this answers your question. If I recall the name I will let you know.
Ken.
Adding to what is being said above:
A proper hospital pressure sore mattress has to be suitable for pressure ulcers stage 1, 2, 3 and 4.
We went for the next level down with a pressure sore prevention foam mattress... Which is what most nursing homes use until there are issues.
Here is an article.
nursingtimes.net/preventing...
The last one air fluid is more for for burns.
xx
Hi
my husband was diagnosed with CBD in 2013 but his first symptoms were 2010. It took 3 years of tests before diagnosis.
I have been caring for my husband all of these years and he is at an advanced stage now.
My husband saw a neuropsychiatrist quite early on for anxiety, depression and anger issues and the medication prescribed did help.
IF there are any questions you would like to ask, please do. I will do my best to answer any.
I am in the UK
Denise X
Hello
Mum has CBD, we are in the UK. Diagnosed 2016 but having symptoms since 2012.
The cognition side of it is declining and we are waiting for an appointment with the mental health psych in a few weeks.
Her stiffness and ability to move is also declining. Since about Nov last year her progression has speeded up and she is withdrawing more and severe apathy
Spiralsparkle, sorry to hear about your mum, this disease is heartbreaking. Is hers low, moderate, or severe, my sister is severe. That's what her doctor told us when she had her MRI and was diagnosed with CBD. We knew something was wrong with her but we had no idea it was this bad. My sister is only 58 way to young to be losing her life to this disease. At times she doesn't know me or is mad at me for things I haven't done. Good luck with everything!
Oh gosh that is a young age indeed.
The neuro didn't really give a level of the CBD just said mid/ overlapping with late stages in 2016. He did do a more in depth scan than an MRI and did want to do another one end of 2017 to compare but we didn't bother as not worth the stress and energy for Mum to be put through another one, it's not going to change anything by knowing how much more the brain is diseased.
Mum has become a brain bank donor, she hopes it will help others in the future. I've also registered aswell. It is likely I could end up developing some neurological condition as the past 3 generations of females have in one way or another.
It so heartbreaking when your LO doesn't know who you are or believes you are doing something wrong. It is the hardest part I find to emotionally cope with. Bad bowels and vomit I can go onto auto pilot with.
Love to you and your family
Spiral, may I ask your mum's age? If thats private I certainly understand. I dont know why, but I follow patients here who were diagnosed or symptomatic in and around same time as my hubby. I guess its my need to analyze & compare, as if that gives me some kind of understanding how it will go for him...
Hugs to you XX
Anne G.
Hi
She is 70, 71 in July.
Hugs back
Gosh! Younger than my hubby by 8 years... BTW, you must be young..too young to have to deal with this for so long. 💗👏🌸
I'm a young 45 lol ....think we all feel older than our birth years!
My wife was 73 when we got a diagnosis. She was 70 when the first symptoms appeared. I am now 76 I get a lot of support from friends and family. We have a care company who make four visits a day. Two nurses call once a day to administer drugs.
I also get sits from nurses from the local hospice. My wife sleeps well and I am seldom disturbed during the night so don't require night sits. Ken.
Thank you for being so kind, yesterday I went to relieve her husband to do some errands and she was was mad at me when she opened the door, though I was stealing her clothes, but I can't wear her clothes. Come to find out she had dropped one of her pills when her husband gave them to her, so he gave it to her and her whole additude changed in about 45 minutes so everything was better. Those stressful times are hard,especially her thinking I did something bad to her. Her doctor ask her if she ever ate fish, she said no and he said not eating fish has alot to do with it too. I take fish oil pills and I love fish. I don't know something to think about. Talk to u soon!
Cjp: the doc meant not eating fish contributed to her disease?..or her current symptoms?? Both hubby & I take fish oil daily for decades....
.Also great to hear a medication can have such a quick good effect!!
Hugs to you XX
Anne G.
Yes that is what he told her, yea I was glad don't like her thinking bad things about me.
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